A diagnosis of Dementia with Lewy Bodies should only be done by a qualified professional.
However, a simple checklist for Lewy Body Dementia Diagnosis may help you advocate for a loved one more effectively. Afterward completing it, when you see your specialist, you can discuss the results of the test. Mentioning all the specific symptoms they exhibit that are known to commonly accompany the condition.
Exceptional research by James E. Galvin, MD, MPH, led to his publishing of The Lewy Body Composite Risk Score (LBCRS) in Autumn 2015. In it he has created a very simple, ten question test that has incredible accuracy in predicting the likelihood of the presence of Lewy Bodies.
Simple Checklist for Lewy Body Dementia Diagnosis
How many of the following have occurred at least three times over the past six months?
1. Slowness in initiating and maintaining movement or have frequent hesitations or pauses during movement?
2. Rigidity (with or without cogwheeling) on passive range of motion in any of the 4 extremities?
3. Loss of postural stability (balance) with or without frequent falls?
4. Tremor at rest in any of the 4 extremities or head?
5. Excessive daytime sleepiness and/or seem drowsy and lethargic when awake?
6. Episodes of illogical thinking or incoherent, random thoughts?
7. Frequent staring spells or periods of blank looks?
8. Visual hallucinations (see things not really there)?
9. Appear to act out his/her dreams (kick, punch, thrash, shout or scream)?
10. Have orthostatic hypotension or other signs of autonomic insufficiency?Total how many of the above 10 items occurred at least three times during the past six months. If the total is three or more, there is a very high likelihood of the presence of Lewy Bodies. Discuss the results with your medical specialist.
Copyright 2015 The Lewy Body Composite Risk Score, James E. Galvin
The full article is a must-read. Dr. Galvin elaborates, “A screening test in itself is insufficient to diagnose a dementing disorder. The Lewy Body Composite Risk Score (LBCRS) is, however, quite sensitive to suggesting that there is a high probability that Lewy bodies are a contributing pathology to the underlying cognitive decline either as a single pathology or as a mixed dementia. The LBCRS discriminates DLB, PDD and MCI due to Lewy body disease from other forms of cognitive impairment.”
James E. Galvin, M.D., M.P.H., is Professor of Neurology, Psychiatry and Population Health at the New York University School of Medicine and one of the most prominent neuroscientists in the country. In addition, Dr. Galvin is a professor of clinical biomedical science in Florida Atlantic University’s Charles E. Schmidt College of Medicine and is also a professor in FAU’s Christine E. Lynn College of Nursing.
Do you ever see a person who just, overnight, not be able to stand up the next morning, followed by 24 hours of extreme confusion, hallucinations, REM acting out and extreme combativeness, then mellow out after Haladol administered and begin to walk again albeit slowly and stiffly? ( 78 yr old male with developing dementia)
Sorry that is your experience, Sharon. That is unusual but I’ve seen drastic and almost instantaneous changes happen when an infection has developed: particularly a urinary tract or respiratory infection (such as Pneumonia).
It is possible that this is not Lewy Body Dementia. Careful diagnosis is needed.
Haldol is one of the most strongly recommended against, as are all traditional antipsychotics. So it’s good that despite its use he is not too negatively impacted. If it was me, I would still ask that Haldol and any traditional antipsychotics not be used again. Ask about alternatives that are commonly less catastrophic with LBD. These could include Seroquel/Quetiapine, among others.
I hope he improves and stabilized and that your specialists can arrive at a successful treatment method.
Strength to you! Timothy Hudson
Haldol I believe killed my dad, along with all the drugs given after his back surgery. He was sent to hospice where he was basically put to sleep.
Very sorry for the death of your dad, Kim. It sounds like his trajectory was similar to many who need to undergo surgery, and that the trauma of the operation, anaesthesia, hospital stay, etc., lead to a drastic decline. May your horizons brighten, despite the terrible blow to your family with the loss of your father. Strength to you, Timothy Hudson
How very, very sad when drugs are prescribed that were not meant for that particular case. I am so sorry for your loss
I am so dertermined to keep the amount of drugs prescribed to my husband at a very minimal.
That Quetiapine is awful stuff!
My husband slept for 10 hours straight! His legs were like mush!
We tried 1/2, 1/4 and even an 1/8th and he was still sleeping!!
I finally decided to stop it and he’s back to his old self! Not sleeping all the time!
I think Aricept is helping tho!!
Sorry to hear you had bad outcomes with Quetiapine, Ada. That’s not that uncommon, sadly.
We had several times where my loved one slept for far, far longer than usual, and was un-rousable. Even with paramedics and fire-fighters trying to awaken her. Then woke up, as if nothing had happened. The sleep issues, whether they are the REM sleep disorder, active dreaming, mixing dreaming with waking, sleeping too much, cycles being completely inconsistent, awake all night, and more are very challenging aspects for many.
Very glad you have found the Aricept to be helpful. Long may it last, Ada!
Strength to you.
Timothy Hudson
Mornings are the most difficult part of my day. When I try to rise from bed, my body seems confused and unable to balance and coordinate. It takes several minutes sitting on my bedside to collect myself. It’s so routine that I don’t think much of it anymore. I know I don’t sleep restfully, as my bed is torn apart end to end. I’m not on any medications to control my delusions or hallucinations (my brain is very sensitive to chemical change). I’m a young male in my 50s, experiencing Parkinsonism with neurodegenerative disease with several overlapping neurological issues.
I have been diagnosed with LBD last November. I was waiting for a hyperparathyroid operation and my consultant referred me to her collegue to check for parkinsons, as my memory and stability weren’t very good. However, once I had had my operation, everything thankfully went back to normal, including my balance.
I had a Datscan and this apparently persuaded them that I had LBD, but I have no symptoms. I don’t see things that aren’t there, I don’t have any tremours, I am not confused and know where I am. My speech and language are fine too. I am afraid that I have been diagnosed as ill, when really I’m not. I know that a Datscan result isn’t all conclusive, so in the absence of any other symptoms, could I be okay after all?
Sorry for the diagnosis, and for the medical confusion you’ve experienced, Alison. Very upsetting to get a diagnosis, doubly so to have confusion with it. Since you’ve reviewed Dr. Galvin’s checklist, and if you feel you don’t exhibit any of the key symptoms, I’d suggest you raise this with your specialists. A DAT-scan can be very illuminating, but with no hallmark symptoms, it certainly seems odd to have that diagnosis.
> I hope you’re correct, and don’t have LBD, and that you can get this straightened out ASAP.
> Strength to you, Timothy Hudson
My mom has had shaky hands for years. In the past few years she has had short term memory loss.
After a fall, she was going in for surgery and the anesthesia caused high carbon dioxide levels. She had delirium for a few days.
A month later she entered a rehab and she became delusional and outright violent.
She was diagnosed with a Urinary Tract Infection (UTI).
She has been better the last few weeks, her normal self — but my sister, after researching, thinks she has LBD. I think her beginning dementia was exagerrated by the anesthesia and UTI, but LBD?? Neurology appointment next week. I hope it is a good one — who can tell.
The delusional mom was scary and sad. Can this come on so sudden?
Hi Becky — sorry for how things have gone with your mom. It’s so very hard. I wouldn’t expect a certain diagnosis, primarily because dementias are most commonly mixed, despite common belief. Could be a mix of many things, not to mention the potential impact of some undiagnosed mental illness or medication problems. The latter is surprisingly common. Also, delirium can have lasting effects, but it is possible she has LBD, if the checklist on which page you’re commenting indicates it. It’d be worth printing and bringing with you to the neurology appointment.
> For everyone’s sake, I hope it is not LBD. But if it is, an early diagnosis will avoid medication problems, and make the difficult journey the best it possibly can be. She’s lucky to have you and your sister on her side!
> Strength to you. Timothy Hudson
My mom died of LBD at 79. Everyday, I live in fear that I, too, will get this dreadful disease. I am 68 years old. I am in great shape (I have exercised my entire life). I have read lots of research on LBD, and have no symptoms listed. However, my mom had gastro issues for many years preceding her dementia. She was always nauseous and unable to eat anything but mild food. I have had nausea that comes and goes for 20+ years. I have extensive related tests that come up negative. I can’t help but wonder if these are symptoms of LBD. Am I being unreasonable and jumping to ridiculous speculation?
I understand your concern, Kathleen, being the adult child of a person with LBD as well. And with stomach issues also. However, I wouldn’t attribute them to LBD. They’re very common for countless other conditions, many quite innocuous. There’s evidence of a connection between the location of the alpha-synuclein proteins in the gut and later the brain, but that has yet to be shown to be causative in any way. For me, I’m not expecting some of the mild issues that periodically show up are LBD-related, like a poor memory, etc., just that stress causes these too. As a person who cared for a loved one with LBD, one encounters countless stresses, and this has negative impacts.
> Here’s hoping for no problems! Strength to you. Timothy Hudson
Hello :
My son is 28 but in the last 4 years has had one health issue after another but his father and I have noticed a real change in the last 6 months with his rigidity, movement, and he seems to stare into space or just not be present. Is it possible at this young age he would have LBD? We live in Canada so not sure where to seek a physician who may be more informed with this. Thank you
Cathy Motherwell
Hi Cathy: Sorry to hear what’s going on with your son. I’m not a doctor, so can only speak from personal experience, and do not give medical advice. It’s not impossible he has LBD, I know of one other person who had it this young, but it is exceedingly rare in someone at this age. What you describe could be from a staggeringly vast range of conditions, so it’s definitely best that he see a specialist. I’d suggest a neurologist, but these typically require a referral to get seen, in Canada. And with the current COVID19 situation, that’ll be difficult. The first thing I’d do is get to a general practitioner, ideally your family doctor, and describe what’s happening — particularly the combination of rigidity, and what you perceive as not being present. If it’s just those two symptoms, I do not believe it’d be LBD — there’s quite a few things missing, as the article your comment is coming from shows.
I hope things turn out the very best possible. He’s so very blessed to have such actively involved parents.
Strength to you!
Timothy Hudson
I am 37. I believe I may have Lewy Body or another degenerative disease. For past two +years I have had visual hallucination and misperceptions. My visual acuity is decreased. I have poor depth perception. I have been diagnosed with “convergence insufficiency” as my eyes do not work properly(my eye doc asked if I’ve been in an accident-I haven’t- this is also a sign of Parkinson).When I read, the letters reverse as if I have developed dyslexia, but then go back to normal. I suffer from tremors in my fingers that go side to side on an intermittent basis. I suffer from word finding issues, short and long term memory loss, and inability to recognize faces and objects of people. I have hearing loss. I get all over muscle twitching and myoclonic jerks and an exaggerated startle response. I get stiffness in my wrists that makes my handwriting sloppy. Mild dysphagia. Also, dysautonomia such as gastroparesis, hyperhidrosis, dry eyes and low libido. Some nights I have kicked my husband in sleep, or cry out in my sleep. I take no medication. A neuropsychological eval at Cleveland Clinic showed mild cognitive inefficiencies but was not “strongly suggestive” of neurodegenerative disease. I feel dr are dismissing me due to my young age. I don’t know what to do. I have been to six neuros.
I’m not a doctor but am a patient, Dxd with Dementia with Lewy Bodies (DATScan, PETscan, MRI, plus clinical signs & Sxs). I’m 68, had my first delusional episode in my mid 30s, and neurological issues with my eyes in my early 30s, which couldn’t be explained or Dxd (diagnosed). My eyes would zigzag back & forth, & all I could do was wait for it to stop. I now know it’s called nystagmus. Also my vision would occasionally split, with one eye stuck upward & the other one stuck looking downward. In 2006, I had a FUO (fever of unknown origin, 40°C, or 105°F) for a week plus many other symptoms (Sxs), started falling, having severe dizzy spells, & had my first hallucinations, at age 53. Hallucinations can be visual, olfactory (smelling things that are not there), gustatory, auditory, sensory (I feel water running down my legs), so later I was considered “early on-set”, but not actually Dxd until 2019 because for 13 years I was continually blown off. All my Sxs attributed to my many autoimmune diseases, or I was declared to be a hypochondriac, menopausal, mentally ill, depressed, or under stress & was always referred to a psychiatrist. In Mexico, on my own, I got a full body PETscan, which revealed brain atrophy, both Cortical & Subcortical. I researched & knew right away that it was Lewy. The neurologist I followed up with immediately ordered a DATScan which showed severe neuronal loss—practically zero left of the Putamens (“tails”), and significant loss of the Caudates. In medical literature, which I have subsequently read, there are cases of people as young as a 14 year old teenager who died of LBD, confirmed on death by brain autopsy, as well as 3 siblings in their 20s, dying of LBD, also confirmed at death by brain autopsy. The father later developed LBD at age 75 or thereabouts. Unfortunately, LBD is not a Dementia confined to the elderly or just to the “early on-set.” There has been much newer research that has proven this to be true, so don’t let a doctor insist that you are “too young.” Unfortunately, most neurologists have not “gotten the memo” & will continue to disagree with you if you happen to mention it, which I personally don’t recommend because you will automatically be pigeonholed into the “nut-bar” category. In fact, even children can & do have dementia. It is rare, but it does occur and is usually hereditary . In no way do I intend to frighten you, but only wish to encourage you to strongly advocate for yourself. I did not, & unfortunately I had several elective surgeries with general anesthesia, which launched me permanently to a much later disease state, as general anesthesia should be avoided at all cost because of it proven affect on neuronal death. Hence the DX of “early-onset” which only came after I went & got my own PETScan done in Mexico, where a doctor requisition is not required. I had to get a PETScan anyway because, again, on my own, I suspected I had Polymyositis, a rare & painful autoimmune disease (in the family of many Myositis diseases) that attacks & destroys muscle tissue. I got the MRI which showed severe muscle inflammation but the gold standard test for Myositis diseases is a deep muscle tissue Bx (biopsy), which I got done, once again in Mexico (where I live). (This was before my Dx of Lewy.) For some reason, I insisted on no anesthesia, so for over 45 minutes, I felt everything cut, every cauterízation of bleeders, all the pulling—extreme pain—but now I’m glad I didn’t have anesthesia. The Bx was positive for both Polymyositis & Dermatomyositis, very unusual. The protocol is next to have a full body PETScan because Dermatomyositis, & to some extent Polymyositis, is somehow connected to a high risk for cancer. My PETScan revealed no cancer, but did reveal brain atrophy, which serendipitously aided my eventual Dx of Dementia with Lewy Bodies & eventually a Dx of Parkinson’s Disease, & in addition, the very rare Posterior Cortical Atrophy Dementia (PCA). In other words, I hit have the Dementia Jackpot. Please advocate for yourself as strongly as you can. Let’s hope it’s not LBD, but instead something curable or at least something with a good treatment. Some days I don’t know what I am or where I am. My disease state is now picking up speed, I’m about stage 3 in PCA. LBD is difficult to stage but I am having some of the Sxs of late stage LBD. Cognitive function with Lewy varies widely and so one day it can seem as though you are almost “normal” but the next day you can’t speak or remember anything. The night time sleep behavior you describe sounds like the classic REM Sleep Behavior Disorder, a hallmark of LBD, which I also have. Mine is fairly well treated with Clonazepam. The usual Tx (treatment) with Benadryl as well as the medications for Restless Leg Syndrome, give me severe Akathisia, a movement disorder. My heart goes out to you & I hope you get a valid Dx soon. Some of your visual Sxs are very similar, in my opinion, to those that I have with Posterior Cortical Atrophy Dementia, which can occur at younger ages & is not specifically an old age Dementia. The Posterior Cortical area of the brain is where our brain interprets the signals sent by the optic nerves. So your eye vision may be perfect buy your brain vision is not. The late & great Dr Oliver Sacks wrote much about his patients with PCA. It is very rare though, so unfortunately most neurologists refuse to hear Zebras hooves at at all & insist that everything is horses hooves—in other words, they refuse to believe that you could be the rare person who has PCA. An MRI could greatly aid in the Dx of PCA. Good luck & keep persisting, though I know how expensive it can get, not to mention horribly frustrating & a difficult strain on relationships. I apologize for typos, etc—I do have dementia. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3943077/
Very sorry for your multiple challenges, Gail Marie, but thank you for posting your story, which I am confident will be very helpful to others. Although your situation would indeed be very rare, particularly with these combinations, it highlights the importance to actively pursue a diagnosis, with the hope of getting the very best treatment for what are, frequently, very complex comorbidities.
Strength to you! Timothy Hudson
My husband was diagnosed with Lewy Body by 2 Physicians, he has seen roosters in the house, along with “critters”, and lots of “people”, including those who tell him what he should be doing. He falls easily, including backwards, walks with a shuffle, fine tremor in his hands, and his voice is now getting softer. He has angry outbursts out of nowhere, left the house constantly, and is in and out of lucidity. This all in a 6 month period, though he did have some periods over the past couple of years of cognitive issues. He is now in the hospital after becoming violent at home and we are waiting for placement, He has been seen by a Geriatric Psychiatrist in the hospital who says she has never seen Lewy Body Symptoms, I gather she was with him for 5 minutes, and claims he is Alzheimer’s. His meds appear to cause him to ramp up, the aides with him 24/7 have noticed this, as have I. How do I handle this? I was never asked for a history.
Very sorry for what’s happened, and how things have progressed both with your husband’s condition, and his hospitalization. However, I’m glad that since he’s had violent episodes that you are safe at home, and he’s in a safe environment, even though hospitals so often worsen cognition and behaviour due to the environment. I hope they will more carefully and thoroughly assess him, and find some viable and effective treatments. It is very, very difficult, since conditions evolve independently and most people with one form of dementia actually have at least one additional one, and how they interact an change over time makes treatment devilishly hard to maintain.
He’s so very blessed to have you as his angel and advocate. I hope you’ll be able to get further consultations and improvements.
Strength and courage to you.
Timothy Hudson