Medical professionals ignorant about dementia

David J

This is maybe a rant, and singing to the choir to boot. When my wife was in the ER the other night, a horror in itself, I observed a lack of knowledge of Dementia. My wife was not the only dementia patient in the ER. One was repeating the same conversation over and over. The nursing staff started out responding to him, but after a few hours started ignoring him. Another, who was constantly yelling “Helooo, where are we going?”, was put into a closed room and ignored. She was sent to radiology the same time as my wife, and the chorus changed to “where is the CAT scan, helooo, where is the CAT scan?”  The staff and other patients where laughing. 

When my wife went in to the scan, I offered to come in, put on the lead apron and help keep her calm, as I had done previously. I was bluntly refused. I then had to listen to the tech yell at my wife through the intercom to stay still, telling her it’s only 5 seconds, this is the last one, etc. She was in there a long time. The tech didn’t understand that a person with severe dementia can’t follow direction, doesn’t understand time, reacts to tone of voice more than words, and will be terrified by strange surroundings. 

When will dementia care be part of training for all medical professionals?

Joydean

David I am so sorry that happened to your wife and the other patients. To answer your question, my own personal opinion, never! The only ones that will even care about learning about dementia are the ones that end up having a family member having dementia. As I said this is just my personal opinion and from my own observations. 

Wishing the best help for your dear wife! 

zauberflote

Agreeing with your rant! Taking Mom to ER was never pleasant for anybody. I believe the providers are trained to speak directly to the patient, which is often well and good but only if you already know you're talking to a reliable source. 

What got my goat bigtime was, "Miz Mama, we're going to perform xyz on you and you might have some discomfort, okay? Well, Mom tended to want to please, and sometimes to repeat the last thing she truly understood, in this case, "okay"! So she'd say okay... and they'd carry blithely on thinking she had agreed with them. (Also, she was a bit deaf and never got the hamg of various accents that she'd never heard in her life until she was 90!)

Scooterr

David that just pisses me off to hear. The healthcare system is broken no other way to say it. It seems like they hear the word Dementia Patient ,and they become the Dementia Patient totally forgetting the responsibility of care for their patients. My wife and I had Covid about 2 weeks ago. When we went to the Urgent Care the nurse asked my wife a question, and of course since she is nonverbal I answered for her. I then informed the nurse my wife has Alzheimer's and was nonverbal. The nurse then asked my wife another question and of course I answered. The nurse looks at me and states,  "why can't she talk?" Now this is an RN not an aid or a LP but an RN.  Now I'm thinking , well it's better off I don't say what I'm thinking, but some how and some way healthcare has got to realize how big this problem is. The reason I think they don't care is because it happens to older individuals and they don't want to waste their resources (money) on us.

Rescue mom

It’s so true. I was shocked for years at how clueless so many health care pros—including doctors—are about dementia. One memorable response about DH Alzheimer’s, from a doctor! was “oh I know, my grandpa was forgetful too.”  Then they continue to expect rational behavior and answers to important questions.

 I am no longer surprised, but I am more insistent that I be present for everything, and review any info they may have gathered without me. So far they haven’t stopped me, although they’ve tried and it took strong argument. And DH makes it clear, often in unpleasant ways, he wants me with him (not always a good thing but has helped with this.)

The ignorance is unbelievable, especially given that I live in a huge retirement area, and the aging population grows everywhere.

I think this is something that the more we talk about and make known, the more it might, maybe, might, help.

ThisLife

I just wanted to join the chorus of health workers having no clue about dementia. ER personnel, doctors whose specialties includes elderly, the list could go on.   I also don't need this fight.

Funny story (well not really) FIL in emergency room for UTI. ER overloaded wall to wall beds in the hall. No one but patients allowed in. Told nurse he had dementia and she wanted me with him. Standing at head of his bed. Staff tries to do EKG. He's not having any of it. I talked him down and kept him calm for tests. Nurse tells me not to go anywhere. Security makings rounds in ER moving nonpatients out. He tells me to leave. I explain nurse has told me to stay and why. He tells me I can leave of he'll call police. I go back out to waiting room. Twenty minutes, nurse sticks he out and asks me why I left. I explained. She brought me back in ER, grabbed the security person, and said I was to stay! I managed not to smirk.

Paris20

One of the reasons I changed dermatologists was that even though he took good care of me after my melanoma surgery, the doctor was completely at sea when it came to my husband’s dementia. While my husband went to the rest room I quickly told the doctor about the AD diagnosis. He said, “One of my old med school profs was terribly forgetful but that happens with old age.” I contained myself when I explained the difference.

JoseyWales

I'm so sorry that all of you have experienced bad times with medical professionals.

Maybe it's the fact that I used a small town hospital or I just got lucky, but all my experiences with ER, hospital stays and medical tests were with wonderful people. They all let me stay and help. I was even asked to help keep DH still during x-rays, and was draped with aprons so I could hold him in position. 

My only problem was getting to see the right professional. But the ones who we did see were great. A bright spot in our otherwise dark path.

Ed1937

I have accompanied my wife several times in ER. In all but one case, there was no problem when I insisted on being with her. I also had to hold her steady for X-rays. The one time I got a little push back was when she went by ambulance. When I went into the ER, I was told I could not go back to be with my wife. I had a pretty intense argument with the person behind the desk. Finally I got in touch with a patient advocate, who cleared the way for me. Caregivers should not have to put up with that stuff. They have enough on their plate already.

Jo C.

Have run into this so often including rudeness.  My step-dad was so hard of hearing he was near deaf without his hearing aides..  In  the ER he did not have his hearing aides; he had taken them out at home and I did not realize it.  The Supervising RN knew that as I had explained that to him during his initial RN assessment.  In about an hour, that same RN gave me a very rude and BIG lecture on how terrible it was that my step-dad was so disoriented and not able to communicate and why had I not had him seen by a Neurologist for a neuro problem . . on and on. . . what?  Well; the RN had tried to talk to my step-dad and he was not answering appropriately and mostly saying, "Yes, yes, okay." Had to explain  to that RN again that step dad was without his hearing aides and that he was embarrassed he could not hear, so when anyone talked to him and he could not hear, he would answer in the affirmative such as, "yes, yes, okay."  With hearing aides on, he can hear and communicate without difficulty. "Oh," said the RN and walked away.

My poor mother was often in the ER. Left on a guerney, no one watching, finally each time my insisting they permit me to stay at her side as I was concerned about her trying to get off the guerney and she was not capable of providing information about her health . . . had to insist like mad to get in and stay. 

In the hospital, just as big a problem with my LOs with dementia.  Bedside staff and most of the physicians clueless.  Most of the medical staff RNs and MDs may get basic dementia teaching - the clinical facts re the disease itself, but they sure do not seem to get dementia education where the rubber hits the road in communications, etc.  Few will be competent,  but mostly not.  Sometimes this lack of capability led to problem issues that could have been completely avoided.

And . . I am an RN with a Master's Degree.  Never got anything but that clinical information which by the way was short and then never discussed again, and no student nurse experience caring for patients with dementia.  Had at least caring and tried to manage in detail which helped.  Had most of my education as various LOs were diagnosed with dementia and climbed the learning ladder the hard way as most of us do.
 

I had an unexpected visit to a large hospital last year.  The place was packed and was also affected by COVID issues.  My roomate was a woman in her 90's who had advanced dementia.  She screamed and screamed and screamed 24/7 with only short breaks; she hardly slept at all except for maybe intermittent 20 minute breaks.  I did not sleep for three full days due to the screaming and yelling. No other beds available.

I kept my curtain closed and did not turn on my TV and stayed quiet so as not to frighten the poor woman any further.  The RN came to take my vital signs and she complained that trying to feed the patient with dementia was really difficult because all she did was cough the whole time and could not understand why - perhaps it was the patient's way of refusing to eat.

OMG.  Okay.  My response was, "Gee, that must be difficult.  Hm-m-m; do you think there might be the possibility that the coughing is because she may be aspirating her food and liquids?" The look on the RNs face  - shock.

Next thing, the doctor had ordered tests. He was dreadful; I saw him and could hear him.  He was talking to the patient as though she could understand his complex discussion and asking her questions she could not answer much less respond to; she just kept hollering and screaming even harder while he talked. BUT - he did order a test. No meds to help ease her fear and panic.  I thought; well, at least she will get a swallow test and then they can make a good plan for her.

Nope. Whatever test had been ordered, it needed a nasogastric tube to be inserted at the bedside. OH NO!  In her 90's; deeply demented and there were three RNs surrounding her; each one of the RNs shouting different instructions all at the same time and trying to hold her body and head in place while they tried to put an NG tube through her nose and down her throat.   It was horrible.  Talk about my hair standing on end!  I wanted to shout - STOP! Why would this ever happen at her age and in her condition and then three RNs all shouting instructions at her all at the same time, and no one, no one, trying to calm and care for her AND no RN advocating with the doctor for not conducting such a test.   I will never, ever forget that.  Late on the fourth day, the poor woman was transferred to a different room so I do not know what happened to her.

Bottom line is; you and I are the advocates and protectors of our LOs.  Never underestimate that.  My personal belief is that if one can do it, I would not want my LO alone in the hospital at any time of day or night.  But that is not always possible.

Frankly; I do not like to be alone in the hospital myself.  I do not know what the immediate answer is; but it sure does need one as well as the nursing and medical schools doing a far better job of educating AND that all of such students must mandatorily have so many hours caring for persons with dementia in the clinical settings.

J.

MaryG123

My DH psychiatrist, who manages his bipolar meds, and is a lovely person, had a similar response the other day.  We have told her about his memory issues, and were explaining an episode of confusion and aphasia he had last week.  I said we were worried about dementia, and she looked shocked.  She said, “Oh, you don’t have to worry about that for another ten years!”  My husband and I discussed it later and agreed that no doctor wants their patient to have dementia.  It’s probably time for us to find a geriatrics doc.

DJnAZ

Your rant is spot on. It is stunning to me just how little most medical practitioners know about dementia. Especially neurologists. It also appears rather than admit their lack of knowledge/understanding of the disease, they simply don't want to deal with it.

Several neurologists, who I thought would have at least studied the disease at some point during their career, used their diagnostic time to give my wife a Montreal Cognitive Assessment test and prescribe Memantine and Donepezil. After the brief time the doctors actually spent with us, their recommendation was to take the prescriptions and schedule a follow up in a month. As we left the exam room one doctor gave me a stack of Alzheimer's Association pamphlets and said, "good luck".

Michael Ellenbogen

CCan I share this with my er Dr friends who are looking to improve the quality of care for those with dementia  in the er.

Gig Harbor

I was an ER nurse for 40 years. I never turned down help from family especially for a dementia patient. If someone had had a stroke or didn’t speak English I asked family to stay if possible. Only if too many came in the room did I ask some to leave. I also tried to be aware of family members who actually needed to use the ER visit time as a chance to take a much needed break. I never understand medical staff who turn down help or who don’t want to listen to family members and what they have to say.

David J

Michael, you can certainly use my initial post. I can’t speak for others re: their responses, but it seems I’m not the only one.

Ed1937

David J wrote:

Michael, you can certainly use my initial post. I can’t speak for others re: their responses, but it seems I’m not the only one.

I see no reason why he couldn't use them all.

Joydean

Micheal, I agree with Ed. If you showing the response here could help even one doctor to understand what caregivers go through would be beneficial. At least you are trying to help and I want to personally thank you!!

DrinaJGB

I hear your rant and feel your pain. When my DH broke his hip in 2017 he was left in the room after surgery and ignored. No one helped him use the bedpan.

This nightmare started on a fluke. He had suffered a near fatal viral brain injury in 2010 that left him with many impairments and a diagnosis of mild dementia due to the viral invasion and scar lesions the encephalitis left behind.

Upon my insisting to the case manager that he needed more help and better follow up due to the encephalitis injury that nearly killed him, I was promptly and arrogantly told by her that "well, that's an OLD injury and has no bearing on the current situation" to which I replied "you need to educate yourself."

He was also ignored when he was sent to a rehab facility---getting no help to use the facilities. I would come in the mornings only to find him soaked in urine and sometimes feces. I promptly had him discharged home with home therapies instead, and worked with him daily on his exercises-----and filed a grievance against the rehab.

He walked into the surgeon's office for his surgery follow up with only the aid of a cane to which his surgeon was astounded.

 You really cannot count on anyone else.

We are on our own in this journey. It's like a bumper sticker I saw one day while sitting at a red light "NOBODY CARES". No sh**.

Michael Ellenbogen

Thanks as this will help many.