Does Lewy Body Dementia look like Parkinson's?
My husband has been diagnosed with Lewy Body dementia but it appears to look like Parkinson's also? What is the difference? He has had dementia for over four years, and around six months ago a tremor in one hand appeared. The tremor is getting more pronounced -- radically so. He seems to be exhibiting almost every symptom of Parkinson's.
Lewy body disease can indeed look like Parkinson's. The dementia that manifests in Parkinson's is a Lewy body dementia (LBD). In the earlier stages of LBD, the manifestations tend to mimic Alzheimer's disease (AD). It is not rare to be diagnosed with a dual diagnosis of AD and LBD or Parkinson's.
I am not a physician, but 30 years of working with cognitively impaired adults does give me a sense of the major, although not entirely unique, differences between LBD, Parkinson's and Alzheimer's. I believe that getting an early diagnosis, as you have done, greatly helps in planning future care. A sensitivity to neuroleptic medications is rather common with LBD. Hallucinations may often occur and be very real and frightening to the patient. Neuroleptic meds may be prescribed to help alleviate hallucinations so it is helpful to be aware of the possible negative side effects for this group of patients. Your pharmacist can be a great ally during this phase of the disease.
Other symptoms of LBD, which separate it from the other illnesses, such as Alzheimer's, include but are not limited to: (1) a dementia that appears to fluctuate leaving the patient seemingly able to function at a better cognitive level during parts of the day or week and at a much more confused level at other times; (2)seeing things that are in fact not there (hallucinations) and truly believing that these aberrations exist. Trying to diffuse the visions by rationalizing or reasoning with the patient only leads to anger and frustration; and (3) the judicious use of non-neuroleptic meds may be needed to control this behavior; and motor symptoms beginning with barely noticeable shaking which progresses to full tremors as the disease progresses.
My suggestions for the most positive caregiving would be:
- Befriend your pharmacist and have him help monitor medications that will not cause new caregiving or patient issues.
- If you are not already exercising daily with your husband, I recommend beginning now! Physical exercise will help his body tone and his sense of well-being and if you can exercise with him it serves a double purpose. A physical Therapist can come to your home to help with exercising as the disease progresses. This service is usually covered by a third party payment
- A heart-healthy diet seems to have positive effects on brain health. Offering healthy meal and snack choices may assist in keeping cognition a bit longer.
- A great website for information on LBD is lewybodydementia.org. It offers an overview of the disease and answers many caregiver questions.
- This online site, caring.com, also offers solid information and support.
Please take care of yourself. Healthy caregivers can more easily become the most positive carepartners.
To Anonymous Caring.com community member
I'm the adult son of an 87 yr. old LBD patient. My Dad's had LBD for a year and a half that I know of; at least that's how long he's had the diagnosis. My Dad has had the hallucinations, he use to be a pilot and when we flew him out here to our house (my Mom and I accompanied him) he kind of lost it on the commercial airliner and tried to go up to the cock pit to find out what the pilot's plans were, now that was scary at 35,000 feet and no place to go. Anyway, the shakes have slowly crept in and we found out it definitely was not Parkinson’s because my Mom has real Parkinson’s and when the Doc's prescribed the same Meds they definitely did not work, they made the hallucinations worse. Surprisingly, my Dad still has enough trust in our family members that when he does see the hallucinations he asks our family that when he says to us "Did you see that woman float by over there" and we say no and he jokingly shrugs his shoulders and says "Oh, I guess I'm the only one that can see it, must be one of those dreams again" and we go on from there. I've learned that getting my Dad under Hospice care has been one of the most helpful things our family has done, and it was at no cost to us, Medicare pays for all of it, I don't know that my Dad is going to pass away any time soone but the hospice folks are an extra set of eyes that look out for my Dad, I found that if you take the time to interview all the hospice agencies available in your area, you can probably find one that will fit your needs, We picked a hospice nurse that is very matter of fact and dots her I's and crosses her T's when it comes to my Dad's care and this was all for his benefit. I really feel that she works for my family and me and has my Dad's best interest at heart; I'd recommend you take the time to do the homework on the hospice selection; it will pay big dividends in the long run. One other thing that goes along with the hallucinations is my Dad also is starting to get a little bit paranoid, he's a little afraid to take his meds, afraid someone is trying to poison him so just know that this is part of the LBD as well. Keeping the perfect balance with what ever is the right meds for your husband is absolutely critical, we can tell almost the same day if my Dad is having a problem with his meds, maybe he missed one or maybe he spit one out but if he's missed his med for what ever reason, you may see the Jeckle and Hyde side of the LBD. That’s why I like the hospice nurses, I am not a medical person but the nurse we use does a wonderful job of keeping an eye on the meds, their amounts, when they were dispensed, and if anything needs to be adjusted. I hope this helps; I just wanted you to know that you are not alone; there are more of us out here that are going through the same thing you are with this LBD. Keep your head up, you'll do fine. Respectfully, Lancer, Tucson, Arizona
One question that always arises is whether the patient has Parkinson's disease (PD), LBD, or Parkinson's and Alzheimer's. If the movement disorder came first it is PD. If the person had cognitive symptoms first, it is LBD. The difference is critically important for the following reasons: 1. People with PD are put on medications that contain dopamine for motor (movement) problems. In LBD the person has what is known as a Parkinsonism and only about 5% respoind to the sinemet (dopamine). But the sinement will enhance the psychosis. 2. People with LBD are exquisitely sensitive to any medications that affect the brain. This includes the cholinesterace inhibitors used in Alzheimer's (aricept, exelon, razadyne). Thus people with LBD may have fewer problems with illusions, agressive or psychotic behavior, and tend to have a more positive response to these medications than people with AD! 3. As previously mentioned, mood controllers -- epsecially the antipsychotics may have more adverse affects in LBD thus when they are used they must be very carefully monitored.
Finally, if the person with LBD makes a threat or an aggressive gesture, the caregiver must get it tireated immediatly or it will get worse. Many of the professionals in the field have had caregivers seriously injured and/or killed by someone with LBD who would "never hurt his wife/husband/etc"
If you arte a caregiver to someone who has LBD make sure you have access to a good (behavioral) neurologist or geriatric psychiatrist The disease is much more tricky than AD and you need some resources.
Geri Hall, PhD, ARNP, GCNS, FAAN Advanced Pratice Nurse Banner Alzheimer's Institute
Thank you all for your insight. Very tricky combination. Thetremor in the right hand has gotten prgressively worse and did come after the cognitive issues. it appears by what I see here that there is no tremor medication that would not conflict or make matters worse in Lewy Body Dementia. i have not experienced any aggressive behavior, actually quite the contrary. Thank you all so much. We have another doctors visit in a couple weeks. We are in our 5th year. It was early onset sad to say.
My husband was diagnosed with LBD 3 years ago, he had a tremor most of his adult life in his left hand. It got worse with age, and he developed Hydrocephalus which added to our problems. The LBD was not the biggest problem as we were dealing with multiple shunt revisions for 2 years. Then he had a very big stroke in May, he became a different person. I don't know if it is the lbd or the stroke but his hallucinations are now constant, his paranoid delusions are off the chart. He also goes thru periods daily where he cannot control himself--sometimes trying to jump out of bed and lands on the floor, over ande over. He lost the use of his legs just before the stroke, so he cannot stand and now is in a memory care center because he is so difficult to deal with. He has so many issues, but the one that makes me the saddest is the paranoid delusions, he is never happy and always complaining about everything. You can't reason with him or he gets angry---------Is it the LBD or the stroke, who knows, but it is horrible and so unlike the kind, loving and gentle man I have loved for 30 years.
To expand a bit on Geri's very helpful post:
It is my understanding that if the Parkinson's symptoms begin within two years of the dementia symptoms, the patient has Lewy body. If the Parkinson's symptoms appear more than two years before dementia symptoms appear, the patient has Parkinson's dementia. And if the dementia appears more than two years before the Parkinson's symptoms, the patient has another dementia disorder (probably Alzheimer's) with parkinsonism.
Parkinsonism is the same set of symptoms as Parkinson's, but the trigger for the condition is different. Often, the trigger is a drug, e.g., antipsychotics (which frequently cause parkinsonism), metoclopramide, and phenothiazines. Drug-induced parkinsonism may be reversible, so if the symptoms are disabling, or heading that way, you may want to consider weaning your husband off the drug. Other triggers include certain infections, stroke, encephalitis, meningitis, carbon monoxide poisoning, exposure to certain toxins, and narcotic overdose.
If your husband is on a statin, I would suspect that, too (speaking from personal experience...)
Secondary parkinsonism tends to be less responsive to Parkinson's drugs, as Geri noted (Geri, where'd you get the stat of 5%? -- I haven't ever seen a hard number), but could be tried if the cause is not reversible. Do, however, keep a close eye out for new symptoms or exacerbation of current problems. Many of the medicines used to treat Parkinson's symptoms can cause severe side effects, especially increased confusion. Keep a journal of symptoms before and after starting any new med or changing the dose, so you'll be better able to detect drug-induced side effects. Even a very low dose of Sinemet caused significant cognitive decline in my husband within a month. Fortunately, he improved when taken off the med.
I am so sorry to disagree with those silly rules about lewy body and tremors/dementia. Every patient is different. My husband had a begnin tremor most of his adult life. Doctors never knew why and never pointed to Parkinsons, he was told "excess amount of adrenilin", he was told a traffic accident when he was 16 may have caused it, no doctor knew over a 50 year span. Then the beginning of our symptoms were loss of balance, slow walking, like his feet were stuck to the floor, short term loss of memory. Keep in mind he also had Normal Pressure Hydrocephalus. After shunting, symptoms continued and he got progressively worse dementia wize.
To me the symptoms that really separate LBD from AD and Picks, and other dementias are: early on screaming nightmares in their sleep, later on, acting out in those nightmares with hitting and physical acts. Halucinations came about 3-4 years in. Being lost, being confused. But being able to say they are lost or confused, not like AD patients who seem to not communicate those feelings. Beieve it or not, a dripping nose! I go to a couple of support groups and we have found this is a constant in our husbands. Last -- and this one I am not sure of, we have found most of our husbands have a terrible cough ---they have been tested for every possible cause in my husbands case, this has gone on for nearly 10 years.
I don't know if this helps but I have lived with the diagnosis of "parkinsonism" ,NPH, and now a severe stroke for a long time and look back to the tremor and other symptoms we didn't recognize as long as 10 years ago.
To Lancer O1: My understanding of Hospice care is that it is only meant for patients deemed to be in their last 6 months of life. It is not meant to be a free ride for caregivers. My husband is turning 80 soon and has all the neurological problems but he is in excellent physical health. Does your father have some other medical condition that diagnoses him in his last 6 months of life? How long have you had him in Hospice? I am very curious about this as I don't think Medicare will pay forever. I have to pay $5k a month for my husband's care in a dementia unit. A nursing home can run $6K+. Medicare certainly does not reimburse me for his care and I don't believe he is in his last stages of life simply because of LBD or any of his other neurological diseases. Please I would love to hear if he has other health issues. Good luck. Kat
To Loving Nana, I appreciate your comments; hopefully our discussion will help other readers. As I mentioned, I am a family member, not a medical person and I agree 100% that Hospice is meant to be used for end of life care, I never meant to infer otherwise. I use to be afraid of the idea of Hospice Care, what I've learned is, it can be very helpful. While my father has been on hospice for 10 months, the trouble is, none of us knows when the end will come. Hospice will pre-evaluate each patient to see if they meet the national hospice guidelines to qualify. I know of some people who have been on Hospice for three years, and others have passed away in a month. We have almost lost my father three times since he's been on hospice, notwithstanding the fact that although he may have LBD and a few other ailments, he is one of those "Greatest Generation Guys"; he's a WW II Vet. and still has a strong constitution but then again he could be gone tomorrow. As for other illnesses, he has a large, potentially fatal, aneurysm on his Aorta, Congestive Heart Failure (which makes him cough constantly), Parkinson's like symptoms, he gets Transient Ischemic Attacks (TIA, mini strokes, LBD, hemorrhoids, he has a pacemaker, bad hearing and bad eye sight, constant runny nose and drooling. Yes we are also paying $4,000 a month for my Dad to stay in a Dementia Care Home in addition to what Hospice provides. My father has a personal physician that visits him regularly in his assisted living home. He has a Cardiologist, a Neurologist, as well as the hospice RN just to keep tabs on things, all of whom thought my Dad would have passed away months ago, he has a Do Not Resuscitate (DNR) Order so we will only treat things that can be fixed, not planning on any heroic measures, basically maintaining a quality of life with out pain and letting him pass on with dignity. Now I know that may be subject to interpretation by some people and I'm sure there are some folks who would do things differently. I would submit that each family should deal with their own set of circumstances, as they deem appropriate, I don't believe there is a right or wrong answer. My father has his good days and bad days but he is slowly declining. As my father has told all of us many times, "It's been a good run" and our family is OK with that.
Good luck with your particular set of circumstances, I hope things work out for the best.
Respectfully, Lancer 01 in Tucson
Dear Lancer 01 I am so glad you straightened out the Hospice thing, the original post might lead many frustrated caregivers to believe they could go to Hospice and medicare would pay for all the caregiving. Today the major problem I see with aging and dementia illnesses is taking care of the ill. I spent more than 5 years as my husbands sole caregiver and was worn out when his stroke rendered him in need of full time care. Since then I have been going to and reading many online support groups dealing with caring for those with severe dementia. The number one problem is money. Most caregivers are worn out but cannot afford in home or assisted living or nursing homes. We are lucky to have long term care, most are not and cannot afford to place their husbands or wives at a cost of $50 Thousand plus plus a year and maintain their own lives. That is why I was concerned about your post as I interpreted it as your Dad was in Hospice, Medicare pays --look into it. I am so glad you corrected it, many times I have been asked about Hospice and I understand in some instances like your Dad's it is hard to determine what is "end of life". Clearly he has many life threatening illnesses, My husband faces three severe neurological conditions, but none would place him in hospice. LBD, parkinsons, even NPH and strokes do not always kill. IN LBD, as the disease progresses, swallowing is a major problem and because most of our loved ones do not want feeding tubes etc, that swallowing issue can lead to death. My husband's stroke literally collapsed his right ventricle of his brain------doctors were amazed it didn't kill him, but instead, his physical health is downright excellent thanks to a very long lifestyle condusive to longlife.
I am glad you have the wonderful Hospice people to assist and care for your father and it sounds like you all have the right attitude about his long and wonderful life--------you can also thank him for me for his service during the "greatest generation" service to his country.
One thing you mentioned and I am trying to find this out from every LBD patient I run across is-----the nose drip and the cough. Your dad's cough may be from his other ailments, but I have found that the nose drip and a long term (12+ years) cough for no reason (one that is very loud and distrubing, I can't even watch TV in the same room with Steve for his coughing). I am finding these are things to watch for in determining LBD as sub factors.
To Loving Nana and others:
LBD is caused when the Lewy bodies (cells that usually present in an area of the brain called the substantia nigra) are misplaced and form in the same part of the brain affected by AD. It is similar to when the placquers and tangles of Alzheimer's disease (AD) show up in another part of the brain such as the frontal lobe.. You get a mixed clinical picture. With LBD you get a "Parkinson's Plus" syndrome characterized by the previously mentioned: 1. Fluctuations in mental status with periods of real clarity
A REM sleep disorder with bad dreams, restless legs, night terrors, etc.
A Parkinsonian tremor (resting tremor, or rigidity, flat facial features, slowed movement, decreased arm swing when walking, and a gait (walk) where the steps get smaller and faster as the person walks, and is more broad-based). Most patients have one or more of these symptoms with LBD but as Nana said all patients are slightly different. The Parkinsonian symptoms are not true Parkinson's disease and less than 5% of people with LBD respond favorable to dopamine or dopamine agonists. (I got that percent back in the late 90's when I was working in behavioral neurology at Mayo Clinic.) And administering dopamine produces psychosis.
Medication senstitivity to medications that work on the brain.
Psychosis that generally includes true hallucinations where there is no reason for the person to see, hear, or smell the illusion. Often these start as animals. There is also frequently depression, and paranoia.
Many many people with LBD derive real significant benefits from the cholinesterase inhibitors such as Arivcept, Exelon, or Razadyne.
The other thing is that there are other Parkinson's Plus syndromes with similar symptoms to LBD including CGBD. PSP, and mutiple systems atrophy. All are slightly different but tough to manage. What neurologists do in their specialty is observe, desribe, and label symptoms. This doesn't necessarily help families manage the disease. For that you need a team including Neurologist, geriatric psychiatrist, nurse, social worker, physical therapist, speech pathologist, and occupational therapist.
Finally I wanted to comment on the tremor issues. A tremor is not a tremor, is not a tremor. There are three basic types of tremor:
An action tremor, aka benign essential tremor. This is the one that many of us have, present since childhood and may worsen as we age. When we go to do fine work our hand shakes.
An intention tremor is an indicator of cerebellar dysfunction. If you hand a person a sppon with food on it, the hand will start towards the face but quickly you will see a tremor develop that becomes extreme as the food nears the mouth so the hand is swinging back and forth.
Resting tremor. If the person is actively moving their hands you do not seem the tremor. It is only when the hands rest that you see a tremor described as "pill rolling." so the fingers flex abnd unfelx slightly. A very fast treor becomes rigidity. A quick and esy way to diagnose resting tremor is to have the person stick their tongue out and hold it. You will see the tremor in the tongue. Or you can feel it by holding your hand over the persen's muscle just aboive the elbow. Move the forarm up and down and you will feel a racheting in the joint. That is called "cog wheel rigidity."
So, the tremor you had in childhood was most likely a beign action tremor.
Geri Hall, PhD, ARNP, GCNS, FAAN Advanced Practice Nurse Banner Alzhiemer's Institute
Thanks Geri for all your valuable information. I stand with my statement that all patients are very different so it is difficult to diagnose most. My husband has all your described tremors. Yet, all his adult life he was told his tremor in the hand was "begnin essential tremor" yet, he developed all the tremors, yes, even in the tongue and has full blown LBD. He is also the only person any of his neurologists, neurosurgeons, GP's and other healthcare workers have ever seen with not just LBD but a very tricky case of Normal Pressure Hydrocephalus. (13 revision surgeries in 2 1/2 years) Then he was hit with a very severe stroke (not such a surprise). All kinds of sites try to narrow down symptoms like what came first the tremor or the dementia etc, and it just simply does not work. EVERY CASE IS DIFFERENT. Not only different patients, but every doctor has a different opinion. Most, neurologists and neurosurgeons admit they don't have enough information to firmly give diagnosis to many patients with early onset symptoms. It takes years of watching and looking for more symptoms before they can clearly give a diagnosis and in our situation 3 neurologists and 2 neurosurgeons completely missed my husband's LBD.
I tell people that the doctors are truly still "practicing", we went to our 3rd neurologist at a major university hospital and I took a list of 11 questions to ask (we had been dealing with the disease for at least 4 years by then) After every question was asked, the reknowned Neurologist replied "we don't know". When we were done I asked him how he does a job where we don't know is the response to these questions and he replied "I don't know, and it is very difficult every day".
Most patients we have run into have similar stories, so patients dealing with neurological diseases have to learn to have great patience and understand there is so much about these diseases we simply don't understand. I remember the first neurologist we saw nearly 10 years ago described how difficult it is to diagnose by telling us the great BIlly Graham had similar symptoms and they found out Even HE with all the great doctors at his disposal was misdiagnosed early in his neurogical disease.
It is a difficult thing to deal with neurological diseases, but I have found that honesty from the neurological professionals with all the mysteries still out there is the best practice and USUALLY THE PERSON CLOSESET TO THE PATIENT-------who has done their own research ----knows pretty well what is going on, but they continue to spend a great deal of time looking for any answers they can get---even if they are just educated guesses. Kat
One of the reasons every patient is so different is that while they share some common disease characteristics most people with LBD are past 50 and have a whole brain full of experiences, intellects, cultures, family dynamics, and personality traits that color the presentation. Moreover the disease doesn't affect the areas the same in each person. Some are more present in the dominant side versus the non-dominant and as the disease spreads to other areas of the brain more symptoms present. So each patient is a separate presentation.
With multiple pathologies another variable is added that muddies the presentation. If a person has LBD plus strokes or hydrocephalus one never knows what the predomonant symptoms will be.
I've been doing dementia care professionally with families/patients and in our own family since 1978 so while there are common symptoms it is always amazing to see how different each individual can present.
YES to the dripping nose!!! My poor mom is always reaching for a kleenex, napkin, etc. Her little nose just pours sometimes. She started with hallucinations, was put on seroquel (not a good drug for LBD!) by a "I am a doctor and you know nothing" neurologist. Luckily we decided she needed better care and looked into Rush in Chicago where they diagnosed her with LBD with parkinsonism. She sees a geriatric specialist, a movement disorder specialist, and a neurologist. She is finally on the right combination of drugs that don't leave her groggy and foggy all day. Assisted Living is the way to go if you can afford it (selling their house and having a sister pass away was the reason they can at present); then when they run out of money, the related nursing home to the AL place will take them and help you apply for medicaid (providing your father doesn't give away money to everyone as mine tries to do until we took his checks away). God bless all those who care for their parents!!! (and husband, wives, etc.)
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