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In LDB the memory loss is the last thing to happen.My mother was in quite good shape for over 10 years.
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I would say geriatric psychiatrist or behavioral neurologist. My husband got the correct diagnosis for LBD the first time around, over the phone! He had Rem Sleep Behavior Disorder (RBD) before science had even associated it with LBD, and had been followed for years by a psychiatrist specializing in sleep disorders. When I called him after my husband was diagnosed with "confusion" and described the symptoms he said immediately "That is Lewy Body Dementia! I have a colleague at the Mayo clinic, a behavioral neurologist, who specializes in that disease. I'll see that your husband gets an appointment with him." And that saved us months of unhelpful guesses. (By the way, that diagnosis was confirmed 10 years later via autopsy.)

You want to see someone in the correct specialty who also has extensive dementia experience. In fact one of the physicians most liked within my caregivers support group is not a neurologist but has a true passion for treating dementia and has made it the center of his practice.
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My mom was only treated by a neutogist. She was always so stressed eith these appointments and that made me so sad. She would say I hate this doctor he makes me feel do stupid. After awhile, we would practice a few of the answers to his normal questions so she would get some right to make her feel better then casually mention we were practicing so the doctor would then slip in a few different questions. Once we moved moms primary doctor to a homebound doctor, she took care of everything snd we longer had to go to these visits. P
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My mom, who passed in feburary of this year had LBD and PD. My mom was normally very calm and quiet. After a few years and receiving the right diagnosis I could look back and see things that we missed before . Threshold problems big time. My mom would walk thru living room holding onto my dads arm and the minute she step into the bathroom, she would just go down. That was the beginning of my mom not walking. I think since she was more aware, she was more afraid if falling. We got to the point where mom was too much for dad to handle alone at night. My sister and I would take turns spending the night. Many nights mom would see things in her room. We would have to hold her each night, this made things a little better. Trying to tell her that what she was seeing only made things worse. The worse part of this disease was it left my wonderful mother totally helpless. But when spending the night she would say about 100x, you sure you don't mind staying with me? What I would do to hear that one more time!
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Wondering where have you gone to get the diagnosis? Pschologist, neuurologist? Mom's Dr wants her to have a psych-evaluation? The psychologists I've called don't do it
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Carol provides a good summary. In addition fluctuations in cognition is characteristic of LBD. (It is actually a diagnostic criterion.) Patients of all diseases have good days and bad days, but that is extreme in LBD. Unfortunately this causes some health care workers and others to assume the patient must be faking or seeking attention. No. The person with LBD really could do this task in the morning, have it completely beyond him in the afternoon, and be able to do it again in the evening.

Problems with depth perception are very common in LBD.

Memory loss is not only NOT the primary symptom, it is a different kind of memory loss than in AD. Most LBD patients know their loved ones, nurses, etc. to the very end. LBD memory does not fade progressively through the years. With AD a person may be mentally living in their 50s and then their 40s, etc. That is not the case with LBD. My husband forgot what he had for breakfast or even if he had breakfast, but did not forget that he was in his eighties, or what decade this was.

LBD is considered to have a high caregiver burden partly because the difficult behaviors -- paranoia, belligerence, hallucinations, etc -- come so early in the disease.

LBD does not include as much cell death in the brain as AD and therefore there is greater hope of a good response to medications, but that varies greatly from person to person and also by the skill and experience of the doctor managing the medications.

Each type of dementia is a terrible, devastating disease. None are "easier" or "better" -- they all are heartbreaking.
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In February my dear husband was diagnosed with both Alzheimer's and Lewy Body dementia. He has classic symptoms of ALZ including evidence of brain changes on an MR I and confusion. The LBD symptoms include Parkinsonian effects such as rigidity, a soft voice, a "poker face" and slow walking. Because of the dual diagnosis his condition has worsened rapidly. In October he woke up one morning unable to stand or walk. He was hospitalized for five days and since no evidence of stroke showed up on scans the diagnosis was progressive LBD. After three weeks in rehab he was still unable to stand or walk on his own. So I then placed him in a residential care facility where he can be safely moved from the wheelchair to bed or the bathroom. He has his own room and a handicapped bathroom and very loving caregivers. The disease progress is shocking and we are both adjusting to this life-altering situation. I hope more attention is given to LBD as it is a ravaging disease and is less well known than ALZ.
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I don't know what my mother, 101 has..he doctor hasn't come out and actually said anything tho's she's been on Exelon, Galantamine, Sertaline for years..she's accused me of stealing from her from 'day one'..taking all her money, her house etc...(why I continue to come back, I'll never know) I've been her caregiver since 2002 when Dad passed and even before I was there for Dad daily...Got a call late last night from her screaming "GET ME OUT OF HERE"...her mood swings are driving me crazy...sometimes I'm thankful for her forgetfulness because one minutes she's a witch and the next minute she's her old self (her old self is fading fast, tho')...Dr has increased Donzepril to 10 mg from 5 mg..I spent the day with her Tuesday as her private person was out...when I got home I was totally exhausted...The paranoia is so much more prevalent and I tell her to be careful what she says and to whom. I dread the fact that they may want to move her to a memory facility...I've recently become her 'guardian' and there's another reason 'I've stolen from her' she can't make any financial decisions, write checks, etc...I've made her copies of all her statements, cd's, etc...not good enough...I'm physically and emotionally drained..Thank God for my husband he's so patient..someone else would have left me years ago..Let me say, I have a brother 4 hours away is always on another cruise...not even a card for Mom's 101st birthday..just a call to say he's leaving on another cruise (his 34th is 4 years)...have a sister who we haven't seen or heard from in 40 years...per Mom...I had a fight with her and that's why she won't come around..the last time Mom spoke to her (about 2 years ago...she hung up on Mom)Mom forgets about that..I'm tired and worn out.
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There are a number of differences, including the type of protein deposits in the brain and area of brain that each type of dementia affects: in Lewy-body Dementia, there are many areas of the brain that are affected (with alpha-synuclein being the protein that the clumps of lewy-bodies are made up of. It is a very aggressive form of dementia. It drastically affects sleep in the form of REM sleep-disorder. (My dad never really slept much at all with this horrible disease). There are days where thinking/awareness seems almost normal, but as time goes on, less and less "good" days. Here are some links that help explain more:

http://www.lbda.org/sites/default/files/diagnostic_checklist_-_v6.pdf

http://www.nia.nih.gov/alzheimers/publication/lewy-body-dementia/basics-lewy-body-dementia

There is no treatment for Lewy-Body Dementia; the drugs really don't do a whole lot to make things better--not in my experience. In fact, the drugs given for Parkinson's can really make the dementia symptoms of Lewy-body dementia worse.

Wish I had good news, but this is a nasty disease--progressive--no cure.
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Tinacat, while memory issues can be a part of Lewy body dementia, they generally come later in the progression of the disease where in Alzheimer's memory issues are usually - not always, but usually - the first tip off that something is wrong.

Parkinson's disease and Lewy body dementia often go together. In fact some researchers believe that they are different manifestations of much the same brain problem.

As mentioned by others, delusions may come earlier in LBD. Acting out dreams and physical tics are present more frequently and often earlier in LBD.

There's no one test that can let the physician know which dementia is present - or if it's mixed dementia which happens - but an experienced clinician can generally figure out which he or she fells is present. This is important because some treatments for Alzheimer's can have negative effects for someone with Lewy body dementia.

Take care,
Carol
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Roppen I sent you a message. My late Fin wife's father was from Finland. I tried on the 6 years to find something anywhere! The FDA prevented the trial that would have helped millions.
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Hallucinations are the best symptom of the decease. They are "clever" and can be mean. But in Finland my mother got excellent medication. She was alert, knew us, we went to a restaurant when she was 90 etc. Hallusinations disappeared. Only problem was that she was in old age home, where most of the people had Alzheimer and could not discuss at all. Dull!
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Penny309, My wife had a lot of hallucinations until they took the Seroquel away. She wanted to get her baby so we bought her a doll. Then afer 2 weeks she wanted nothing to do with it. Quite a few times she tried to get up on her own. I just praised her for trying when she did. As for the Hallucinations, I jsut went along with them. When she said there was a dog, I asked what the name was. After a while I would say the dog needs to go out and would open and shut the door. Marie did at times think the house was on fire or she would think her purse was gone. I had to take her for rides to combat the sundowners when she wanted to go home. 1/2 way into the ride she would want to go home.
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One of the things that is diferent for my Mother is that she has alot of trouble with halucinations, visual : she sees people,animals and things, especially in the middle of the night,but she is not dreaming.Auditory, she often hears loud music playing, and even olfactory, she often smells smoke and is afraid the house is on fire.All of these things just mean that I have to be more creative in the ways I keep her from being agitated: I take the"crying baby" and put it to bed,for instance, or I tell her our radio volume button is broken and I can't turn off the annoying music right now, but that I will have my husband fix it when he gets home. Anything I could say to allow her not to worry about the halicination until it goes away. Other than that,be careful about the parkinson's like symptoms, that part snuck up on my Mom suddenly,taking her ability to walk.She often forgets she can't walk,though,and will try to stand if no one is there with her. She seems to have adjusted to that now, and remains in her wheelchair until someone helps her with excercizing or bathroom needs. My prayers are with you.
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Lewy Body Dementia is a much more agressive form of Dementia. alzheimer's is the leading dementia and Lewy Body is second. As for actions etc, it depends. Everyone is different. My wife was oretty calm except when she had a UTI. The I almost did not know the person I was married to for 50 years. She was a different person, mean and had no idea who I was. Upon the UYTI clearing up, she sometimes did not know who I was but was very calm. Because of the Parkinson's she did not wander because she had problems with walking. I have studied these disease for 10 years now before ,losing my loved one on 9/27. LBD, PD, Ad all have a lot of the same issues and signs of Lewy can make it look like AZ or PD. Hope this helps
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