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Unusual dementia progression?


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Old 05-02-2013, 12:19 PM   #1
jg4471
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Question Unusual dementia progression?

Hello, this is my first post to these boards, or any 'board' for that matter relating to the topic. The issue is my mom, who was a fully functional, normal elderly person (now 86) a mere year and a half ago, but today resides in a rehab nursing facility with a 95% loss of mobility, severe cognition decline, little ability to communicate other than to repeat what you ask her, and enormous discomfort when moved. The first signs of illness were confusion and disorientation, which literally came out of nowhere, then months of little improvement only to hit each declining stage with a sudden downturn. Everything about this has happened in major steps. There was no gradual decline. The last downturn started only days ago, where she was immobilized in bed and it would hurt her just to try to get her up to use the bathroom, which can only happen with complete assistance now. This culminated yesterday with a trip to the hospital, because she was home with a low grade fever and showing signs of delirium (inability to wake her, mumbling speech). In the last 2 weeks alone, she went from a fairly normal sleep schedule to now sleeping 80-90% of the time. The ER doctor ran a bunch of tests, including a urine panel, but said all came back within range. I told the doctor I did notice cloudy urine one day recently and he said that any UTI would be borne out by the results. I still have lingering suspicions, but everyone says dementia progresses differently for everyone. Am I justified in thinking that the doctor missed something with respect to the latest onset of aggravated symptoms? Thanks for any insight anyone can provide.

Last edited by jg4471; 05-02-2013 at 12:24 PM. Reason: grammar

 
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Old 05-02-2013, 08:53 PM   #2
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Re: Unusual dementia progression?

Yes, everybody progresses at a different rate and there are different types of dementia. My Dad did the step down in ability but it was related to his Vascular Dementia and cardiovascular events. Normally, this type of rapid decline is usually related to something... surgery, anesthesia, UTI, stroke, A-fib, heart attack, infection... you get the drift.

The way you say the confusion came on I would suspect some type of infection playing a part. It is frequently a UTI but any infection can cause the same decline. I will say that it does not take a raging UTI to cause cognitive decline. A number of times Mom's UTI did not show up on the simple dip stick test they do first. Twice the Geriatric Physician gave her antibiotics anyway and her cognition improved. She had two negative test before she ended up in the hospital. It was there they finally found that UTI and treated it aggressively. SO don't give up on the first negative urinalysis. Ask if they cultured the urinalysis. Ask if there were bacteria present. It can appear in normal ranges but still have bacteria present and cause the UTI type confusion. As if it was "inconclusive". There may be more than one bacteria present and that will make it inconclusive. The low grade fever is yelling infection.....

Has she had a CT scan to see if she is having mini strokes or other small strokes that can be causing this?

Is she dehydrated? What you described can also be caused by dehydration. It can cause the cloudy urine, delirium, and other symptoms you are seeing. What is her urine output? If it is dark or infrequent, that is a sign of dehydration.

There are many things it could be... but it could also just be the way her dementia is progressing. I am currently aware of several cases that have had this kind of progression. One lady came in the AL walking, talking, and aware. Six weeks later she was in a wheel chair in the locked unit, unable to communicate. There was no medical reason ever found.... so it does happen this way with some.

I would ask the doctor to redo the urinalysis (it is a simple test) and to please culture it. Check of dehydration, and ask for a CT scan. Hang in there and see how she responds....

Love, deb

 
Old 05-03-2013, 04:49 AM   #3
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Re: Unusual dementia progression?

Please do have her thoroughly assessed. As Deb said, for sudden onsets as you described, blood blockages (e.g. strokes) and infections are the frequent culprits. Aside from UTI, please do try to rule out osteomyelitis, as remote as it may be.

 
Old 05-03-2013, 12:54 PM   #4
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Re: Unusual dementia progression?

Thanks for the valuable input. The current status is she had been placed in a nursing home in order to start physical therapy, because the hospital ER refused to admit her. It's been a couple of nights now and the nurse has indicated she has shown times of elevated temperature (as high as 102F). So they duplicated the tests the hospital did and told me that the brain scan showed no signs of stroke or bleeding, her chest xray was clear, and her blood work was normal, but they are waiting for the results of the urine culture. But to say that her blood work was normal is not entirely accurate since her WBC differentials were not in the correct range when I asked to see the test results from the hospital. I haven't seen what the nursing home's WBC diff testing showed. It appears her lymphocytes were depressed in relation to the neutrophils (elevated). Shouldn't that be more evidence of infection?

 
Old 05-03-2013, 01:30 PM   #5
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Re: Unusual dementia progression?

...."lymphocytes were depressed in relation to the neutrophils"....

This combined with the elevated temperature is saying infection of some kind. The neurtrophils will go up if infection is present and the lymphocytes being down make them prone to infection... or indicate infections is present. Not to mention the fact that temperature elevation is an indication of the body fighting infection. Glad that they Rehab decided to redo the blood work. Sometimes it is those small variations (that are sometimes ignored) when combined with other symptoms that lead you to what is going on.

Again I will say... a negative urinalysis does not mean that there is no UTI. It just means it did not show up on that test Mom had a number of negative results that were false negatives.

Keep search and questioning. You are her best advocate

Love, deb

 
Old 05-03-2013, 04:28 PM   #6
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Re: Unusual dementia progression?

Regarding neutrophil vs lymphocyte ratios... As a person ages, neutrophil counts trend upward while lymphocyte counts trend downward. Mom is 86. So I expect that her neutrophil/lymphocyte ratio will be greater than when she was younger, or even when compared to a standardized average. So it is important to know what her baseline neutrophil/lymphocyte numbers are before you can correctly interpret her current numbers.

With that said, Deb is absolutely correct. High neutrophil counts accompanied by a slight fever and low lymphocytes may point to some sort of persistent, low grade inflammation/infection. Her cognitive symptoms may very well be secondary to this.

 
Old 05-06-2013, 06:24 AM   #7
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Re: Unusual dementia progression?

Thanks to the both of you. I was told yesterday by the nurse that the urine culture and analysis results both came back negative, so there isn't much to go on at this point other than intermittent fever. Her level of consciousness on most days is significantly reduced, and with the exception of a few hours a day of wakeful alertness, she seems to slip in and out of a sleep-like stuporous state the rest of the time, only fully conscious for a few minutes at a time. There is no apparent correlation with running a temperature with these episodes. When she is conscious her cognition is significantly impaired. She appears to recognize us, and her mood varies considerably, from laughing to crying, but her level of understanding is reduced and her responses to questions mainly consist of her repeating the words said to her. She appears to be in significant distress at times, but no one is overly fazed by it because such occurrences can be simply ascribed to the dementia process.

I can't emphasize enough to the staff how mystifying this whole thing is. No one seems willing to give me an honest understanding of whether any of this is typical for dementia patients, even though I figured they have seen it all. Equally mystifying for me is the sudden and virtually total loss of mobility. I almost wonder if she doesn't have some other rarer type of neurological illness. I've seen and encountered dementia patients before and they are alert and mobile typically.

Another thing I've wondered of late is that her MRI shows global volume loss and minor microangiopathic changes, but nothing ascribed to a specific neurodegenerative process. Otherwise it reads as a rather unremarkable MRI. I have to assume that a normal elderly brain is going to have some degree of global volume loss. Does dementia actually "show up" on a brain scan, or is the scan just to rule out hemorrhaging and lesions, which are much more readily visible?

I feel like I need to take a crash course in neurodiagnosing...

 
Old 05-06-2013, 11:38 AM   #8
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Re: Unusual dementia progression?

Something you said struck a cord.... "I've seen and encountered dementia patients before and they are alert and mobile typically."........

Yes, this is what we normally see. Mom is out with family, has dementia, but is alert and mobile. This is the stage that we see dementia depicted on TV. This is the mid stage of dementia when there are cognitive issues but they are still alert, responsive, and mobile. What happens after this... in the late stages? Exactly what you are seeing will happen. They will lose their abilities one by one. They will lost the ability to process what you are saying to her. It is not her hearing but her brains ability to understand what the ear is hearing. They will lost their ability to communicate. They can not come up with the words they need and lost tract of their thought after a few words. Words may actually come out as babbles. Their brain is not talking effectively with their muscles and they will become unable to feed themselves or walk, or do much more than just random movements. Eventually they will forget how to digest food and/or how to swallow. The brain controls every function of our body, not just memory and thought, and eventually this disease affects every function of our body.

So what you are seeing may be typical progression of her individual dementia. Some stay in the mid stages a long time and then decline rapidly in the later stages, some do the opposite, and some slide along at a constant downward decline. It is not atypical for someone to completely lose an ability suddenly. If you look back they have probably been having difficulties for some time. Example... Mom was a walker, always walking. She started slowing down, her gait became a shuffle, she would lean to one side, and eventually the falls started. It took a period of over two years. One Friday morning she stumbled a few feet and leaned up against the wall. She never walked again. It was a minor UTI that pushed her off her feet. The proverbial straw that broke the camels back. As fragile as her mobility had become that is all it took. For the last 6 months she was in a wheel chair requiring transfer assistance.

Later in the disease, even the forever wanderers will tend to sleep more and more. Yes, their emotions can be a roller coaster with no explanation. They are incapable of telling you how they feel... they just respond. They may laugh one minute and cry the next. You do need to keep a watch for non-verbal signs of pain. Is she furrowing her brow, squinting up her face, clinching her fist, tensing muscles, crying out in pain, having excessive agitation, or other visual signs of pain? If so then the pain needs to be treated to keep her comfortable. Simple ibuprofen may be enough. If not you might want to go to other forms of pain medication.

....."global volume loss and minor microangiopathic changes".... is typical of Vascular Dementia. No, it is probably not some rare neurological disease but the later stages of dementia. It can come on quickly and progress quickly. Most dementia does not show up in a MRI as dementia and dementia can not be diagnosed from a MRI. These small changes you see in your Mom's MRI do indicate Vascular Dementia... or some other dementia. At this time there is no single test that can accurately diagnose dementia. It is a process of elimination of other causes and tracking the symptoms over time while watching certain test results such as what you see in your mom's MRI. When they read an MRI they are searching for major vascular events or tumors... the small subtle abnormalities are classified as insignificant when in fact they are your best clue to what is going on. It is best to have a baseline MRI and the a later MRI to track the changes. If the reader of the MRI knows you are looking for dementia he might have a different read.

Having been "staff" it is difficult to say that what you are seeing is the late stages of dementia because there is no way to be sure. It might be an infection or it might be the dementia. It might be the approaching end or it might just be a simple medical bump in the road. Nobody really wants to make that call because it is almost impossible to know.

Have you considered asking for a Hospice consult? They are the best I know at sorting through the test results and telling you what is going on. They are not just for the end of life but for assistance with anyone that has a terminal diagnosis... and dementia is a terminal diagnosis. You would just need her physician to ask for a Hospice referral to get the ball rolling there

Love, deb

 
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Old 05-08-2013, 05:50 AM   #9
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Re: Unusual dementia progression?

Thanks for that insightful info, Deb. I just received a copy of the report of her CT scan performed at the hospital during Mom's ER visit last week. Since I am unable to fully interpret such a report, items are mentioned that appear to inquire further investigation, none of which I was informed about upon leaving the hospital, by the way. To what extent these features are impacting her current condition I can only wonder. It reads:

FINDINGS: There is a 9mm nodule in the supracellar region anteriorly projecting between the medial frontal lobes, associated with the anterior cerebral arteries, concerning for possible aneurysm. Contrast MRI of the brain/MRA of the Circle of Willis is recommended for further evaluation. The extra-axial spaces are otherwise prominent, as are the ventricles, compatible with moderate diffuse cerebral and cerebellar atrophy. Gray/white differentiation appears preserved. No acute intracranial hemorrhage. No mass effect. Minimal subcortical and periventricular hypodense white matter disease is nonspecific, likely chronic small vessel ischemic change in this age group. There is dense calcific atherosclerosis of the cavernous sinus segments of the internal carotid arteries bilaterally. Included paranasal sinuses and mastoid air cells appear normally pneumatized. The calvarium appears intact. A cluster of small old lacunar infarcts, right basal ganglia, 0.8 cm in total diameter, series 2, image 10. Symmetric punctate calcifications in the basal ganglia bilaterally are likely physiologic.

Her primary care doctor apparently didn't think anything here was worth mentioning, insofar as impacting her current status or otherwise, because if I hadn't obtained these results by specific request to the hospital I wouldn't know about any of this. Clearly there are vascular (and stroke risk?) implications detailed here, but I suspect the indication of "moderate diffuse cerebral and cerebellar atrophy" was enough for the ER and PC physicians to "write off" her newfound symptoms to worsening dementia. But I shouldn't make any assumptions about what the doctors' think because I didn't speak with them about this. I am going to try to bring this report to the attention of the nursing home doctor because he is effectively in charge of her care while she is in there. Not sure exactly otherwise how to proceed. I need to find a doctor that can correctly interpret these results with appropriate follow up.

 
Old 05-10-2013, 12:42 PM   #10
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Re: Unusual dementia progression?

First, I'm sorry for what you're going through. I truly hope you can find some answers to your concerns. Second, I'm not a medical expert, but I have been caring for my 91 year old father for over ten years. He was diagnosed with vascular dementia, not Alzheimer's, although I think these dementias can overlap, especially over time (I think he's showing signs of Alzheimer's now). My father had a similar sudden-onset issue about ten years ago; we (me and my brother, a psychologist and expert in the treatment of delirium) have now concluded that he had a delirium related to anemia. Unfortunately, doctors refused to believe my dad had a delirium, and as a result, his anemia was left untreated for seven months, and my father developed brain damage as a result. So I know the concerns people have when the dementia-condition doesn't look "typical," and especially when rapid onset is involved. Have they run a CT Scan to rule out vascular dementia in addition to the Alzheimer's? Rapid cognitive declines often make me think delirium or mini-stroke. Does she return to a baseline after a decline (often stroke victims can do this). My father is treated with antibiotics on an almost regular basis because the doctor suspects he has prostatitis. We notice, when he goes back on the antibiotic after being off of it for a period of time, an improvement in his cognition. No infection has ever shown up on his urine/blood panel, but the doctor tells me that sometimes infection can be present even if it is untraceable on the tests. Why can't they just try an antibiotic? It's certainly not going to hurt her and it might help her. And finally, let me encourage you: you are your mother's advocate; do not let the medical professionals push you around; even if you must become the "crazy son of Mrs. So and So," do it, and push the doctors until you get the answers that make sense to you. Had we done this earlier for my father, he would likely not have suffered the brain damage that now complicates his dementia and his cognition. Good luck!

 
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Old 05-13-2013, 06:52 AM   #11
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Re: Unusual dementia progression?

Thanks Mary. Would anemia be evident from standard blood tests? Sorry to hear what your father had to go through. With regards to my mom as of late last night the nursing facility where she resides decided to pursue a course of cipro for 5 days because her last urine sample was positively abnormal looking. Culture results won't be back for a couple of days. Her first culture a week ago showed nothing. Her first two urinalyses showed nothing and recent bloodwork showed nothing. Clearly, however, something is causing the urine to appear this way and it is as of yet undiagnosed. They have been doing everything to keep her fully hydrated the entire time so dehydration shouldn't be a factor here. Her ability to stay alert only lasts seconds at a time, while she writhes and moans in a great deal of discomfort most of the time she is awake. She mumbles a lot, and her ability to communicate is severely impaired. Most responses are exact repetitions of what is said to her, however they are clearly enunciated. I tell everyone she is in a delirious-stuporous state because it seems to be the best way I can describe her level of consciousness. The whole thing is beyond mystifying to me. We are all in agony feeling her distress. I am getting angry that her PC physician relegated all of this to a worsening of the dementia without any apparent attempt to dig deeper and that was on May 1. She is still suffering.
Not to mention her brain CT done at the hospital on May 1 shows features that need following up, and many implicate a vascular etiology. The doctor never bothered to mention the radiologist's recommendation for a followup contrast MRI, and the only was I was able to discover this was by requesting the test results done on that date. I am discouraged by all of this.

 
Old 05-13-2013, 07:07 AM   #12
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Re: Unusual dementia progression?

Thanks Mary. Would anemia be evident from standard blood tests? Sorry to hear what your father had to go through. With regards to my mom as of late last night the nursing facility where she resides decided to pursue a course of cipro for 5 days because her last urine sample was positively abnormal looking. Culture results won't be back for a couple of days. Her first culture a week ago showed nothing. Her first two urinalyses showed nothing and recent bloodwork showed nothing. Clearly, however, something is causing the urine to appear this way and it is as of yet undiagnosed. They have been doing everything to keep her fully hydrated the entire time so dehydration shouldn't be a factor here. Her ability to stay alert only lasts seconds at a time, while she writhes and moans in a great deal of discomfort most of the time she is awake. She mumbles a lot, and her ability to communicate is severely impaired. Most responses are exact repetitions of what is said to her, however they are clearly enunciated. I tell everyone she is in a delirious-stuporous state because it seems to be the best way I can describe her level of consciousness. The whole thing is beyond mystifying to me. We are all in agony feeling her distress. I am getting angry that her PC physician relegated all of this to a worsening of the dementia without any apparent attempt to dig deeper and that was on May 1. She is still suffering.
Not to mention her brain CT done at the hospital on May 1 shows features that need following up, and many implicate a vascular etiology. The doctor never bothered to mention the radiologist's recommendation for a followup contrast MRI, and the only was I was able to discover this was by requesting the test results done on that date. I am discouraged by all of this.

 
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