Sudden decline

KAY61

Hi - I am new here. My husband has moderate cognitive impairment. In the past month he seems to have decline quickly. It was sudden. He is on Memantine and Donepezil. He has an increase in nightmares, increased loss of words/conversations, some agitation mostly when he wakes up at night, sleeping a lot at night and throughout the day, he also has a lot of intricate movements with his hands while napping during the day: reaching for things, manipulating something in his hands or the air. I sent an email to his neurologist and have not heard back. I also plan on finding another neurologist since the hospital and doctor we go to are fairly small. Has anyone experienced this? Any suggestions? He is 74. Thank for your help and any suggestions you might have. It's a very scary time for me, and him I am sure.

Dio

So sorry you have to be here. Did your husband get an official diagnosis as to which disease is causing his dementia? I'm not a doctor, but it sounds like he may be suffering from Lewy Body Dementia, one symptom is acting out his dreams by flailing arms or more aggressive swipes or punches. I don't know the dosages of his meds but these are off label drugs prescribed for patients with LBD. Is he on any antipsychotic meds? In LBD, symptom fluctuations collectively is like a roller coaster, unpredictable and often fast, from days or hours, then can reach a plateau for an extended period of months or even years. And every patient is unique. No cookie cutter likeness. Sadly, doctors who care for dementia patients with practical dementia knowledgeable are scarce. Hope you find one who is experienced, responsive and accessible. Since there's no cure, we can only hope to find the right combination of meds for a particular patient to treat the symptoms.

Read up all you can about dementia, such as a wonderful book called "The 36 Hour Day." I'm sure others with more experience will chime up.

M1

Is either of the medications new or had a recent dose change? Because what you are describing can also be drug side effects.

LJCHR

It does sound like it could be LBD. Also, you might have him checked for a UTI-that will make his symptoms worse suddenly.

Iris L.

Look up "tardive dyskinesia". These are writhing movements of the hands and tongue made as a side effect from some of the antipsychotics. Report this to the prescribing doctor.

If you are still in the diagnostic process, you will need a knowledgeable neurologist. But begin to search for a geriatric psychiatrist, who will be more familiar with the antopsychotic medications.

Iris

ImMaggieMae

KAY61: “he also has a lot of intricate movements with his hands while napping during the day: reaching for things, manipulating something in his hands or the air.”

My husband does this sometimes during the day when he nods off. The movements are slow and smooth, not jerky. If there is music on in the background his hand movements are often in time with the music. It usually doesn’t last long. I just figured it was dreaming.

SDianeL

I would ask for a referral to a Geriatric Psychiatrist who the VA said was the best doctor to manage his medications to help with his behaviors. She has been the only doctor who has helped us. My DH is on Memantine & Risperidone which helps hallucinations and agitation. Write down all his behaviors so you can make sure to communicate all of them to the doctor. Please keep us posted.

DrMichaelSG

Hello Kay,

First and foremost, I'm so very sorry that you and your loved ones are going through this.

I'm not a physician, but I do have a Lewy Body diagnosis, and knows (and "experience" these symptoms every day). The kind folks who've provided the guidance above are spot on that whatyou describe are LBD symptoms. And there are also many other symptoms (hallucinations, loss of smell, among other) that characterize LBD as well.

The "picking" -- if it is lasting for very short periods (say, 2-15 seconds) could also be seizure-related. The reason I say this is the my own cognitive fluctuations will occasionally include picking and flapping of arms; this can easily get confused with seizure activity (which makes sense because both are rooted in the brain).

I had a multiple day Inpatient Video-EEG last year to rule out seizure-related episodes (I do have partial-focal seizures). During that stay, I had several seizure-like episodes (including transient loss of awareness, staring; once, I dropped a pitcher of water during an observed and captured EEG "event"). However, none of the several events that were captured on EEG turned out to be epileptic in nature. Therefore, the neurologists turned toward as a probable cause, and thus began a new direction in testing (as I now know, the neurologists suspected a form of dementia all along).

Also, I agree with use of anti-psychotic drugs. Their use in persons with LBD is dangerous, even deadly. In the event of an emergency, I carry a card in my wallet notifying ER doctors not to give me antipsychotics like haloperidol (BTW, I WAS given I.V. haloperidol about a little more than a year before my diagnosis, this fortunately with no seriously aadverse outcomes). Donepezil (Aricept) can cause hallucinations - I experienced vivid and very scary complex visual hallucinations when I was prescribed donepezil. Many people with LBD are extremely sensitive to medications; personally, I've had this problem throughout my adulthood, this with most medications (as has my 40 year-old daughter).

Yes, please do keep us informed. And by all means, be sure to take care of yourself, too.

Wishing you all the very best,

Mike

Cecil Jones

Donepezil gave my wife terrible nightmares. They stopped very shortly after discontinuing.