Who can determine the diagnosis on the type of Alzheimer's/dementia?

deefer12, in the later stages all types of dementia tend to be similar. It may not really be important any more what kind of dementia she has.

In the early stages of dementia, seven years ago or so, did her level of cognitive skills vary greatly? Sometimes nearly normal and sometimes very confused and irrational? Did she have trouble with depth perception -- hard time judging how to step over a threshold, etc.? Did she ever act out her dreams? Did she have visual hallucinations early on?

When there is Parkingson's there are Lewy Bodies in the brain, so it is reasonable to ask if the dementia symptoms might be from that. Since she sees a neurologist regularly I think I'd bring it up with the doctor. As I said, though, at this point it may just be academic. Managing her symptoms may be pretty much the same regardless of the type of dementia.

If you do talk to her neurologist about the possibility of LBD, let us know what you find out. We learn from each other!

Jeanne, I just went to the site you posted and read the symptoms section. I'm still confused as to whether Mom has LBD. I have posted on your other discussion, but have not heard back from you on thoughts of some of my mom's behaviors. She was diagnosed with PD over 12 years ago and started showing signs of dementia about 7 years ago. She has tremors when she is agitated or it is time for her sinamet and her cognition level is not very good. She is very OCD and is always doing something with her hands. Picking, pulling, pinching, grabbing, biting her fingers, sucking on them, etc. She tries to take apart anything she gets her hands on and has what we call spells, when she is in need of a BM. She literally goes bonkers until she has a BM! She is distracted form one second to the next and trying to get her to eat or take meds is sometimes near impossible. She sees a neurologist regularly and LBD was never mentioned. She does not have lucid moments anymore. Occasionally, or should I say very rarely, she will say something that makes sense. She has not been able to wash, dress, or feed herself for the last year. At this point, I jusy try to keep her clean, fed, dry and as comfortable as she can be.
I would appreciate any input from you Jeanne!

lexi2011, your husband may have had AD 3.5 years ago, and have also developed LBD since. His diagnosis 3.5 years ago could have been wrong (very common) and he might have had LBD all along. That the Parkinson symptoms didn't develop until much later is not unusual.

I hope I don't sound like I'm trying to diagnose your husband or that I want to push the LBD diagnosis. It is just that since it is now clear there are protein deposits in your husband's brain, I'd sure ask the neurologist is LBD is a possibility.

And by the way, just for clarity of terms, AD is a type of dementia. If the neurologist has said specifically "Alzheimer's" (instead of the more generic "dementia") then you do have a diagnosis for the specific type of dementia. But given new evidence, such as the Parkinson's symptoms, it is appropriate to revisit the diagnosis.

Good luck!

thanks jeannegibbs fyi, what I failed to say is that my husband was diagnoised with Alzheimers three 1/2 yrs ago. Just recently we were told he started parkinsons. He is on aricept and namenda, nothing for parkinsons at this time.

Who can determine the exact type of dementia your husband has? An expert examining brain tissue. Unfortunately, as other posters have said, that brain tissue can only be obtained after death. There are many research projects underway world-wide to try to come up with bio-markers of the various kinds of dementia so accurate diagnosis could be made without waiting for an autopsy. Wouldn't it be helpful to have a blood test that could reveal that this patient has both Alzheimer's and Vascular Dementia? But we are not there yet. :(

When autopsies are done and compared with the doctors' diagnosis before death, it is clear that the diagnosis accuracy rate is terribly low. This is less surprising when the doctor was a GP not particularly experienced in dementia, but it is also true of reputable centers specializing in dementia.

Of course there is not an autopsy done on all persons who die with dementia, and our confirmed knowledge of things like the percentage of cases with mixed dementia and what the most common combinations are and what percent of dementia patients have Alzheimers and what percent have Dementia with Lewy Bodies etc is all based on the small percentage who have autopsies. And when you read statistics that are based on pre-death diagnosis, remember that a large percent of those are found to be inaccurate. So our knowledge of how to diagnose dementia is not where researchers (and all of us!) want it to be.

Which isn't the answer you want to hear, lexi2011, but the fact is it can be very difficult to come up with an exact dementia diagnosis.

Because your husband has Parkinson's, it is logical to look into Lewy Body Dementia. Persons with Parkinson's have protein deposits (called Lewy bodies) in their brains. These deposits can cause the symptoms of Parkinson's and/or the symptoms of LBD. There is a pretty straight-forward list of diagnostic features for LBD. If the patient exhibits a certain number and certain combination of them, he would be considered to have either "possible" or "probable" LBD (depending on the number.) You can find this list on the website of the Lewy Body Dementia Association. http://www.lbda.org

While I think it is logical to consider LBD when someone with Parkinson's also has dementia, I don't mean to imply that is the only type of dementia that can occur with Parkinson's. Just that it is worth looking into.

I had my husband to a neurologist who diagnoised his A/D. He never said what type of A/D he has. He did an MRI and the oral test. I guess at his next appointment to the neurologist I will ask him. Thanks to all of you for your help

A neurologist where we used to live diagnosed my husband with Parkinson's about 18 months ago. He also started showing signs of dementia within a few months. Last December, he really started having major problems with dementia/psychosis/hallucinations, etc. When I took him to the ER (which then-neurologist said to do because of the hallucinations), they mentioned Dementia with Lewy Bodies. I started researching online. After another visit with the neurologist we were using, I felt that nothing was being done. We also had an appt with our regular family dr, an internist, as a result of the ER visit. She suggested a 2nd opinion with a different neurologist. This guy sent my husband for all kinds of tests: MRI of the brain, EEG, carotid artery ultrasound, neuro-psych exam (which required 3 visits including a 3-hr test), blood work, PT, OT and a meeting with a speech pathologist. After meeting with the neurologist again, he confirmed Parkinson's and Alzheimer's which is also what the the neuro-psychologist said. As tooyoung said above, a lot of what is diagnosed is determined on the "chicken or the egg" concept: which came first...the tremor or the dementia; are there hallucinations with it? when did they start...before or after the start-up of carbadopa/levadopa, a common Parkinson's med. Since my husband is on the Exelon Patch, carbadopa/levadopa and Lexapro, he is better...not cured, not "normal", but better than he was 2 months ago when I though I'd have to put him in a facility even though he can still shower, shave, feed himself, dress himself, etc. I was frantic! It's better, but there are still changes in his behavior and personality that are frightening. I feel like I'm walking on eggshells all the time because I can't figure out what triggers his very negative reactions. This is a very frustrating, time-consuming and costly journey. Hang in there! We're here to listen and tell you what we have learned from our experiences. Call the Alzheimer's Assoc, call the Dementia with Lewy Bodies Association, call your local mental health group....don't give up! There is help out there and there is no way to be absolutely sure what is going on because so many times the patient does have a combination of several different types of dementia....it is only by trial and error in medication can the right combination be established....you will learn more patience that you ever thought you were capable of....and all of these places will offer you help, support and information. Good luck and God bless!

Your husband sounds exactly like mine! He has trouble with sentences, often uses the wrong word, and knows who people are. Mine also has trouble following instructions or learning new things or dealing with changes, which were actually his first symptoms. He usually understand what is going on, if it's not complicated, but has trouble saying that he understands. Guessing what he is trying to say is incredibly frustrating for him and me!!

Mine was diagnosed with Lewy Body Dementia, the second most common dementia, which has some Parkinson's like symptoms. It took me 7 years to get him diagnosed, but when I got him to the right doctor it was immediate.

His dementia came first, but when he started having a tremor (a Parkinson's symptom) a chiropractor told us to consider Parkinson's and told me to ask the local Parkinson's support group. They pointed me in the direction of the right doctors. The first one was at a movement disorder center that was afiliated with Parkinson's, but also addressed other movement disorders. It wasn't exactly Parkinsons, but they knew the difference and were able to treat it. The first neurologist (an MD) he saw there refered him to a neuropsychologist, a PhD, who did an all day cognitive test to confirm that it was Lewy Body Dementia..

People with Parkinson's usually develop dementia later in their disease progression. With Lewy Body, the dementia comes first and then the Parkinson's like sysmptoms. Which comes first, makes a huge difference with the diagnois.

We recently switched to the Veteran's Administration hospital, and the diagnois was confirmed by another neurologist and another neuropsycologist.

It is very important to get the correct diagnois, because Lewy Body Dementia (LBD) responses well to some medications and Alzheimers doesn't. There are also some meds that you should NEVER give LBD, because they cause irreversible damage. They are meds that are often given to people with dementia, who are behaving badly.

There my be other doctors, who can diagnose this, but my advice is get thee to a neurologist!!

Hi all,
I have had a professional career with hospice, and in senior long term care. Needless to say I've seen ALZ patients at various stages and with different "names" attached to their condition or behavior.
My mom was diagnosed with vascular dementia as well as having a brain MRI that showed shrinkage in the frontal and parital( top) part of the brain. Brain shrinkage in the elderly is a natural part of aging, but the speed and degree to which the brain shows that shrinkage can lead a doctor to assume that the dementia is definately ALZ related. Most forms of progressive dementia lead to ALZ. A good neurologist trained in ALZ can become very accurate at determining if the dementia is likely to be true ALZ. The only way it can absolutely be diagnosed is if an autopsy is done after death, and there is evidence of what is called ameloyed plaque deposits in the brain tissue. I know first hand how difficult it is to deal with the progression of the disease from a personal standpoint. I used to speak with many families about the stages of the disease, and what types of care approach would be best and when, but when it comes to my own mother I struggle with the idea of what needs to come next. Right now she is still at home with a caregiver during the day until about 7pm. She is a gem, and loves mom to no end. She also knows that mom is now to the point where she is noncompliant with taking her meds if they're not handed to her, and refuses to follow other doctor orders that are important for her other health issues as well as her safety. The cost of bringing in more help will be more than moving her to a very nice assisted living. She would have 24/7 supervision and peers to interact with instead of being alone most of the time with the CG. It's not possible for me to care for her in my home, as she'd be alone a lot here with us as well, and I'd have to have someone stay here with her when we were gone. Besides, she doesn't want to leave her own home, which will make moving her to AL difficult.
As others have said, learn as much as you can, stay connected with others that are going through the same thing, and by all means spend as much time as you can with your parent, because things can change literally over night. Cherish the little moments even if they seem childlike. Try to move through the times when they get nasty, mean and say awful things, because that truly isn't your parent, it's a deep seeded change in personality that can be part of the disease process.
Hang in there. and keep in touch.

Somewhere in my research I read an into that stated: "If you know someone with Alzheimer's, you know someone with Alzheimer's." This refers to the individuality and complexities of this disease. After 8 years of grasping for insight by observing and reseaching Mom's tests, behaviors, diagnoses, etc., and trying to figure out what's next, I understand that it is a "focus and act on the specific need of now and today" and "proceed with a non-specific, very generalized, flexible plan for the undeterminable expectIons of the future." This is not to be taken as a defeated attitude but rather to reassure you. Your patience and acceptance and companianship will enable you to see what is needed at each curve and you will be able to make necessary decisions (some not so easy) to accommodate each stage as it develops. Don't worry so much about the future or you may sabotage the time you have now to get to know and understand the immediate needs of your loved one. (If you are a bible person, read Matt.6:34)

Contact the Alzheimer's Foundation. They can help you with any Geriatric Physicians in your area and do give Alzheimer's seminars. What we have learned is what you already know - it is confusing and alot of information. Also, Alz foundation gave us this tidbit - no two alz/d cases are alike - they are like your fingerprints! Each brain is in effect, like a fingerprint and giving a "perfect" diagnosis is impossible. Good luck! We are all there with you!

Read: "The 36 Hour Day". It will give you a few "aha" moments!

Fifty percent of people over the age of 80 have memory difficulties, ninety percent of those are Alzheimer's. The Alzheimer's type cannot be confirmed until after death with an autopsy of the brain. Alzheimer's does not show on MRI or CT scans. In my mother's case the doctor said it was either a series of mini strokes or Alzheimer's. I'm not sure how he was able to reach that conclusion.

Hopefully, with all the research that is being done and proposed they will find the cause (I personally believe that there isn't a single cause, rather a combination of many different contributors), develop a process for diagnosing one dementia from another and maybe, hopefully find a cure and recommendations so one does not develop it.

The first time we got a diagnosis for my mom we were told it was "99 percent" certainty was Alzheimer's. Then after brain scan tests were done, we were told she had had many tiny little strokes in the base of the brain (where Parkinson's originates, I believe), which made it "vascular dementia." (Those first two diagnoses were given during a 2-week hospital stay a few years ago.) Then, after about 6 months, upon followups with a neurologist who had seen her over the years, he gave us the diagnosis of "mixed dementia," explaining that she definitely had "vascular" dementia and that she also very likely had an overlap of Alzheimer's as well. She definitely presents more as vascular dementia then Alzheimer's, though who knows how it will look 6 months, 1 year or farther down the line. None of them seem any better than the other and every person who has a form of dementia needs to be handled in an individual manner. That's what it seems like to me, at any rate. Do all the research on dementia that you can; read all the books and literature you can; and then try to meet your loved one where they are. You will never make them well; you can only try to make them and yourself as comfortable as you can. Good luck.

When my mother was diagnosed, I read every book in the library related to dementia. Mom was put under the umbrella of dementia with the title of "Alzheimer Type Dementia". For now, that umbrella may be the best diagnosis you will have. The Alz type meds have helped considerably. Her fogginess is better, but there's no denying her diagnosis.

I know how you feel. Two psychiatrists later, and I still am not sure except they just say Alzheimer's. Maybe neurologist would be a better bet. That will be my next step if I really think it is necessary. She's 91, and I've maybe put her through enough. I don't know. Good luck. I would try it, the psychiatrists haven't really given specifics.

I can understand and relate to your frustration. I had such a terrible time getting my mother seen for a diagnosis, since everyone denied she had it. After diagnosis, there still is no clear explanation of her condition, I think it is because the doctors really don't know enough, I thought a doctor would sit down and explain things to me clearly, it seems any information that I have acquired I had to sit and do the research myself and come to my own conclusions, very irritating.