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Need your help with Emergency Room Experiences
Michael Ellenbogen
Posted: Friday, December 18, 2020 7:07 AM
Joined: 11/30/2011
Posts: 4322

 I am on a committee that is funded by NIH. They goal of this is two improve the process for people coming to the emergency room who have dementia.  Please let me know the horror stories you had and the good stories. If you have recommendations on what would work better please include them.


I plan on copy this and sharing it with those that can bring change. I will add this in tree places on this site but please only add the information to one of the links.


Thanks as always. 

Michael Ellenbogen
Posted: Thursday, December 24, 2020 9:20 AM
Joined: 11/30/2011
Posts: 4322

 Thanks for those who have already replied. Based on what I have read here over the years I would have thought I would see pages of comments. If you prefer to send it privately, I am okay with that also. Your comment will reshape the ER for those living with dementia. Thanks

Michael Ellenbogen
Posted: Sunday, December 27, 2020 9:25 AM
Joined: 11/30/2011
Posts: 4322

 These are notes I have shared at my first meeting before asking this question from you. All. I plan to share your answers in another week as I am hoping to get more. Pleas also feel free to ask questions of things you would ask the medical team to address or even give your thoughts on what you believe would work.


I have taken the time to add some thoughts to this project. While I am unsure which group this belongs in you can make that decision. Feel free to share this with anyone you would like.


As I have already said, most people who come to the emergency room come because they are aware of the issue at hand and want to be there. That is not the case for those living with dementia, as most have no clue as to why they are there and in many cases they feel like their wishes are being ignored.

We need a new method where staff come to the people to make an assessment if they really need to go to the hospital. Some case are a no brainer but I bet the majority of them are not. I think that will save lots of money and prevent lots of stress for the person living with dementia from a very unpleasant experience. Do you like the feeling of not being able to make a decision for yourself? Well, that is what happens to these folks. I like to call it jail. Sadly, we live in a world where the care homes want to wash their hands of responsibility and the easiest thing for them to do is to send them to the emergency room for every little issue. This not only wastes your time but it creates trauma to the person being seen.  And trust me these visits create lasting problems for the person with dementia for days, weeks and sometimes for the rest of their life.



ED personnel are not trained properly on how to deal with these folks. Your objective is to determine an outcome in 2-3 minutes. Sadly, unless it is clearly an emergency condition that is visible, you are not going to succeed in getting to the issue.  In all other cases you need to respond quickly and create a trusting relationship. That is much harder than you think.

The very first time you come to see this person and how you look at them makes a world of difference.  If they have a caregiver with them direct questions to the person dementia in the quietest setting. Ask your question and stop talking, give them up to two minutes to try to respond.  Treat them as the person they are. While caregivers will know a lot about them, I also know the caregivers think they know more than they actually know. They make many assumptions because they don’t truly know and make up their own minds to make sense of things that may not be true. I cannot stress enough that just that part of communication lessons to be learned will take hours to learn.


Some of these people will have difficulty explaining what is wrong and may even use the wrong word such as saying their foot hurts when in reality it’s their hand. I have lots of difficulty explaining my own issues and more and need to hear lots of words so I can tell you if that is what I have. You need to be at the top of your game and a detective at the same time. And when you ask a question like how long has it been hurting or the intensity of the pain, I can almost guarantee you they will not know other than what is happening in that last hour if you are lucky. Forget about comparing now to an hour ago. I even cannot do that. Assume all pains are very serious.  I was once able to tolerate most pains without medications. Today any pain is not tolerable. I don’t know what has changed in me to tell you why.


Don’t assume because you tell the person something it was understood as we will shake our head yes or even respond like we know when we are clueless. And even if we did understand, the minute you say something else, we lost what you had said before to us.


I know that for most people coming in you like to install IV lines. That should be a last resort if that is really needed. And also make sure the person who does it has a high level of experience rather than a new trainee.


Any change from the person’s daily routine will create trauma for these folks. For example, I used to take my mother in a wheel chair out of her general ward area to get her to see other things; but within 15 minutes of doing that her stress levels went up and she started saying she wanted to go back. Just imagine what calling an ambulance and going to the hospital would do. That is why I feel this should be a last result.  


You also have issues that you probably do not even think of. Many of these folks would probably prefer to die then to continue living with this disease which does not make your job easier. Then you also have about 50 % of them that don’t even realize they have some form of dementia.  You also need to keep in mind that many of them are not in the assisted living centers at their own will or a memory lock down unit. That is why I call these jails. They are thrown into these places against their will and have no choice. Also don’t assume the medical record sent with them from an AL is correct as I have found them to be clueless.


I also believe that an aide should always be with a person with dementia when they are in the ER. They should also have a higher priority to get them out as quickly as possible because they do not understand why they are there or why you are doing this. I know this goes against everything you learned.


Even if a person does not have a diagnosis of dementia, I believe it is important to determine if what they have is delirium or actually some kind of progressive dementia.


And most important when you send that person back make sure they have everything in detailed writing and someone who will be able to insure the recommendations will be followed. I also believe these are the folks that need follow up communications to ensure the progress is being made.


You should designate ER rooms that are for people with dementia. They should be the ones that are very quiet and away from all of the excitement. Also if possible rooms that the charge people can easily see into the room. I would even recommend some soft calming music when you are not asking questions. Don’t assume they know how to push the call button or use the TV.


Also ensure that all of their belongings are clearly marked and labeled so they are not lost in the process. I also believe a special band should be placed on them so all people are aware of their dementia or cognitive issues. Similar to the risk at fall bracelet. One needs to be created for all hospital standards.


All of these things above probably require a much deeper dive into them but this gives you some of my thoughts coming from a non-medical person. 

Michael Ellenbogen
Posted: Wednesday, December 30, 2020 10:37 AM
Joined: 11/30/2011
Posts: 4322

 I have just sent these to the committee for review and at this point I will no longer use any more information. Thanks so much to all who have added your stories. 

Posted: Thursday, December 31, 2020 11:57 AM
Joined: 9/12/2013
Posts: 3608

Michael - it just sank in, the emergency room request from you.

So I shared with you my experience last year and I am so grateful you are turning that fiasco into information for ER people to learn.

I am convinced medical people think of alzheimer patients as second class drag on society. One of the most satisfying moments I have had in past 10 years has been getting my medical records amended and I am still considering further action against hospital.

I hear "I've seen ALZ patients before and you do not have ALZ" at least 5 times plus all the people who think cause i can type who told me I don't have it cause I am not in stage 11 knuckle dragging or whatever their belief system is.

Now we are alone in hospitals cause of pandemic like I was last spring, a couple nurses were particularly cold to my need for pain meds and had told me I would get the med twice a day, only on last day after suffering so much did a different nurse say "Oh no, doctor had orders you were to have pain meds as needed."

They also withheld my daily meds for a week. I was suffering so much I never thought of it until they discovered them on last day there and were indifferent.

I worked in hospitals and never treated anyone like this. I felt less a person than the other patients. My focus was on just living long enough to get out and I did.

I appreciate your efforts over many years and hope someday the world begins to understand slow to respond does not mean we don't get it etc etc etc but the issue is those who have it have to overcome the belief system about ALZ that is standard today.

love and courage