Lewy body dementia diagnosis?

Ah, Ceecee, we all want a diagnosis, and then, please, to know how long the current stage will last and what comes next. I don't blame your MIL a bit. But, as MIL probably told her children and my mom sure told me, we can't always have what we want.

LBD is diagnosed as either "possible" or "probable" depending on how many symptoms match the diagnostic criteria (which you can find on the LBDA.org website). At this point in our knowledge the only certainty is upon autopsy.

Hallucinations is one of three core diagnostic criteria, but it is not necessary to have all 3. Not all persons with LBD hallucinate. (Persons with other kinds of dementia might hallucinate also, but in LBD it tends to show up very early.)

Has FIL had sleep problems? In particular, has he acted out his dreams, flailing his arms and legs, "running" in place, punching out with his fists? That is a very significant indicator for LBD.

How valuable would it be to have a "possible LBD" or "Probable LBD" diagnosis? Some day, let us hope, it will be extremely important to pinpoint the kind of dementia someone has, because there will be specific care plans for each. Right now there are NO medications approved by the FDA for LBD. None. As it happens, many doctors have prescribed Aricept for LBD, and to everyone's surprise it works better for LBD than the population it was developed for (ALZ). But it doesn't work for everybody. For my husband it reduced hallucinations. He took it for 10 years. On hospice they took him off of it, and then put him right back on, since it did make a difference in his comfort level. None of the drugs currently on the market slow down the progression of any kind of dementia. But if they help calm the symptoms, it may appear there is a slow down. Nope. In the brain the dementia is progressing at its own rate, and a point will come when the progression is greater than the help from the drug and it will be apparent. That calming of the symptoms could be very worthwhile, though, depending on the symptoms.

In addition to the limited dementia drugs, many of the symptoms can be addressed with existing drugs used for other purposes. Anxiety, agitation, belligerence, depression -- there are drugs that can be tried. I know I would not have been able to care for my husband at home for 10 years without the support of several medications, carefully monitored by his specialist.

Better than drugs, in my estimation, is having caregivers who follow good treatment principles and have some knowledge of the disease. Teepa Snow videos can be very educational that way!

Whether you get a more official LBD diagnosis or not, I suggest never allowing Haldol to be given to FIL. In case he does have lewy bodies in his brain, that drug can have very serious consequences. This information should be given in writing to any ER FIL is in, and it should be listed as an allergy.

None of the caregivers in my local support group ever mentioned running into an issue about being turned down because of the LBD diagnosis. A couple of them had loved ones dismissed from programs or facilities because of disruptive behavior, but it was always a case of seeing the behavior, not predicting it based on a diagnosis.

Good luck, and keep in touch here!

Rosemary, Dad suffered terribly from violent hallucinations the last 2 months of his life. We had a UTI check and blood work done, and I still don't understand what happened. It seemed to me like someone had flipped a switch. He had Parkinson's for 10 1/2 years and dementia for about the last 3 years. No one ever said anything about Nuplazid. He passed right after Xmas, but I'm still haunted by the fear he lived with those last 2 months. He got some relief from the Seroquel and then Atavan and morphine while on hospice. I guess I'm still looking for anything to help me understand.

My father-in-law had LBD which was confirmed post-death by a medical school to which my m-i-l had donated his brain. Prior to that it was only an educated guess/Dx. So we had a pretty good theory about what we were facing. Knowing with certainty would not have changed anything, however. You just deal with the symptoms and effects - what you call it really doesn't make that much difference.

After a heart attack in 2001, I was given several prescriptions, one of which was Mevacor, a statin drug. After some months, I began to develop a classic hand tremor in my left hand. (I recognized it because my FIL had had Parkinsons.) Also, I began forgetting things--people would come into my work and ask for their orders, and too often I had zero recollections. I started reading up on the meds, and found that both the tremor and memory loss were associated with the statin. I dropped it immediately (yes, I know they recommend being gradual but I wanted it GONE), and within 2 weeks the tremor had totally disappeared and I could literally feel a cloud lifting from my brain. I had also developed severe upper arm muscle pain, which noticeably improved but took about a year to regain full range of motion. I have had NO recurrance of the tremor, and no more memory issues than probably normal, I still work full time. I am not taking any prescription meds at this time, and have a group of natural supplements which seem to be keeping me going.

We have gone through the same thing with my husband. He had a stroke in 2003 and his mobility since then has deteriorated to the point of being bedridden. In all fairness to the doctors, my husband was not a cooperative patient. He’s had extensive therapy and even spent the first 4 months of 2017 in hospital and rehab. We have a $49,000 power wheel chair that sits in the dining room and a Hoyer lift that we self-pay $106 a month for that hasn’t been used since Halloween. He’s just not into it.

Not counting the doctors and therapists in the various hospitals he’s been in, we have seen 6 neurologists on our own. He’s had every test known to medical science. No diagnosis was ever made, nor a prognosis. Because he’s been on his back in bed for almost a year now, his legs wouldn’t hold him up even if we did find “a cure” to whatever he has. He belongs in a Skilled Nursing Facility for that and his other health issues, but it’s not possible. He is mentally sharp and would make everyone’s life miserable in a facility. I totally agree with your take on things. And I wish you all the best.

linda
Your a saint to pass along your experience in such detail........I agree completely!
Did the same thing with my Mom when they couldn't figure out the right BP drug & dosage.
She is now facing a memory loss/dementia/ALZ situation. Am exhausted; mentally drained & depressed & angry myself as I'm still working & taking care of my home as well as hers. As her only caregiver not sure it's even possible for me to do it again......

My husband was diagnosed with LBD by his neurologist who he was seeing for Parkinson's Symtoms. You can't just depend on a general neurologist, but need a neurology specialist in "movement disorder". It is withing the PD community that I am getting all the answers and support re: LBD because they are so inter-related. You don't need to spend thousands of dollars on scans, etc. They can diagnose it by observing the symptoms. My husband is now on the rivistagmine patch and it's helping. Best of luck.

I was frustrated that my Mom never had an official dementia diagnosis though I suspected LBD. Autopsy confirmed LBD and moderate Alzheimer’s. I learned late in her disease that some facilities will not accept a person with a LBD diagnosis due to the challenging and unpredictable behaviors. Then I understood why we weren’t given a label. It’s the same thing with earlier stages of dementia. Doctors will diagnose Mild Cognitive Decline as long as possible so they won’t be rejected from Assisted Living places.

I think many of us have to depend more on observation and self-study than on diagnoses, given the expense of testing and the ugly fact that nothing short of an autopsy can give certainty. Here’s how we are coping with that uncertainty. Before my Mom came to live with us, she had fallen at night going toward the bathroom in her apartment. It was 3 days before anyone found her, and there was severe dehydration and some brain damage due to oxygen starvation. She recovered some functioning in rehab, but we had also noticed before the fall that there were more and more signs of cognitive decline. We were warned by a friend who is a geriatric psychologist to not accept the overall “Alzheimer’s” diagnosis which was bound to occur, but to be aware that there were dozens of dementias, some of which needed very different approaches from what is advised for Alzheimer’s. After she got out of rehab she went through a very bad AL situation and into a very good one. She had a GP who made housecalls but was not that knowledgeable about dementia. She had begun describing what could only be hallucinations and agitation, so her doctor put her on an anti-psychotic, an anti-anxiety and a depression medication. Wow! What a mess! Mom had rarely even taken an aspirin before that so maybe her body was super-responsive to the invaders. Anyway, it did more damage than good, and once we eliminated the meds, she slept all the time. We decided to move her in with us and her new doctor prescribed Namenda. We started with 10 mg, which was too much and increased her agitation. We cut back to 5 mg. once a day at nighttime and it was like a miracle occurred! Now don’t get me wrong, there’s still dementia and it’s still advancing. But my point is that sometimes when you don’t have a diagnosis, it’s useful to read up on the various kinds of dementias, do a checklist of the symptoms to determine which is the best match to the behaviors you are seeing, then become knowledgeable about the various RX’s physicians are likely to try, and get very good at monitoring the response to each and asking about/suggesting others you’ve read about. (I know, you thought that was what doctors did — me, too! Wrong!). I found that as long as I behaved as a fairly well-informed and non-judgmental problem-solving partner (and not as an over-protective, aggressive, critical, and sometimes hysterical relative), I got the same treatment back from the doctors. (Of course, if I did not get that, I did not hesitate to find a doctor with an attitude that worked better for us.). Over time, the troubles with balance, the hallucinations that occur immediately if she misses a dose of Namenda, the depth perception, the amount of activity and conversation that goes on while she’s “sleeping”, the extreme variability from “almost normal” to “almost unable to function”, etc. convinced me it is LBD. It’s not a formal diagnosis because we can’t afford all that testing either. But it’s enough for me to protect her from getting inappropriate medications. While there may come a time to move her to a memory care unit, I will also be able to be proactive with staff about what works with her LBD that is probably vastly different from what works with some of their ALZ patients. Summary: observe, study, and use your best and most loving judgment, with or without a diagnosis. Respect but don’t worship the doctors who are trying to help. And trust your gut. You spend more time with your LO than anyone else and your observations are valuable.

There is no cure for LBD, but there are drugs that slow the progress. Rivistigmine (Exelon) patches are very helpful aiding cognition and slowing the progress of LBD. You may not be interested in any of the drugs now, but you may be later. Patient's can have serious depression and aggressive behaviors due to hallucinations and delusions. LBD is often diagnosed after showing an extreme reaction to a drug commonly prescribed for AZ patients. But as the folks above said, they don't know for sure until autopsy. The key to good care is a good neurologist or geriatric physician, plus a geriatric psychiatrist versed in LBD. (hard to find).

Arleeda - there is a problem if your keys end up in the freezer not if they are lost at bottom of your purse - FYI a nice lady showed me something that I use all the time with my keys & that is to use one of those snap hook that you can buy at a dollar store - put your keys on it & snap them to your purse strap voila easy to find because of their weight they always go to bottom of your purse & migrate into that little corner that's hard to access [the little devils like to frustrate us ...LOL]

By doing a bit of organisation you can minimise some of the stress of daily life - just a few tweeks here & there [like above] can make your day go smoother

My late husband had hallucinations, but only when he was left alone. He also had CT, MRI, 7 hrs of neuropsychological testing.....which was "inconsistent with Alzheimer's," and that's all he heard. He definitely had dementia of some sort, and as he died of massive stroke at 71 about two years later, it was probably vascular. Now my first and ex husband is in nursing home with what my RN daughter says is Lewy Body dementia. He thinks that my son is building him a new house but doesn't seem to realize that 18 months have gone by. He has good days and bad. I am glad that my kids don't think I should do anything, but my daughter is wearing herself out taking his dog over every day while my son visits maybe once a month! Dementia is dementia, and none of it is curable and they apparently give the same drugs no matter what kind they think it is. I worry about getting it myself, as I am 80 and have one copy of gene for late onset Alzheimer's...which I think is starting every time I can't find my keys! But I'm not falling, which was something both husbands did. And in contrast to them, I am not denying my forgetfulness. I don't think I will object going to memory care as I downsized to an apartment after my 2nd husband's death.

My mother was diagnosed with LBD 8 years ago. The diagnosis was not accurate. The only definitive way to diagnose LBD is to examine the brain during an autopsy. That being said, hallucinations are a major part of the disease. There is no cure and very little treatment for LBD. My mother was actually experiencing an drug interaction. She was also diagnosed with Parkinson’s which turned out to be another drug reaction that was causing tremors. An elderly persons symptoms are varied and getting a diagnosis isn’t always the answer.

I was under the impression that only an autopsy could confirm...I could be incorrect.

You can spend all the money in the world and not have a definite diagnosis. That's the problem with dementia, it's not like a bacteria culture or a antigen test that is conclusive. It's pretty much observational and a guess. There is no medical test for it. Yes, they can MRI the brain and look for spotting and shrinking. But that's not conclusive. Plenty of people have no spotting or shrinkage but exhibit dementia. Plenty of people have a lot of spotting and shrinkage but don't exhibit dementia.

The family can agree on a diagnosis, but it won't be part of FIL medical record. The docs have to jump through the hoops to avoid liability.

I would encourage you to go through some of the testing however. The testing is primarily to rule out treatable diagnoses. That's imporatnt, even at his age.

Also understand that having a diagnosis of LBD is very different from plain vanilla dementia. There are medications that are commonly given to dementia patients during hospitalization (and otherwise) that can be dangerous, even fatal for LBD patients.

Also, don't totally dismiss medications being used off label for LBD (aricept, namenda, etc.) We found them incredibly helpful for LBD.