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

she testified against me. I have nothing but her opinion now recorded as who I am. I am college educated in the arts. never tht the law was so messed up

Something is wrong! Have you seen the guardianship papers? A court would never assign a felon as a guardian.

apparently if you live in Arkansas a neuropsychologist and a thieving ,lying caregiver can an acquire guardianship with her testimony in court. even if she's a convicted felon with a history of meth dealing and use. and has lost custody of her kids...but in Arkansas its okay to take this kind of persons word as fact. for real

I think that a lot of factors need addressed when caring for people with these conditions. meds, environmental factors, physical health,foods, etc

would removing person who's 87 years old from the home he's always lived at and keeping him from his son, his only immediate family and too much bp meds as well as other meds we had halved his dosage on[and was doing great] but is now back on, cause false results on test results administered by a neurophychologist? shouldn't a real md make this diagnosis?\

Tracy-
You can ask the court to order a second opinion. I just wonder how this got so out of control and niece obtaining guardianship. It may be too late without getting another attorney involved.

what tests are required to determine nos dementia? could medications, stress, depression , cause the same signs as dementia? what tests can I request to verify this diagnosis?

my niece stole my dad, had him diagnosed by a neuropsychologist to have dementia .took guardianship and now controls it all. is a cognitive test and her "opinion all that's needed to claim he isn't capable of making any decisions? I have lived with him since he fell 3 years ago and now after stealing him and gaining guardianship have served me with a notice to vacate.

thank you jeannegibbs. My uncle died with A. I couldnt see where the medications helped much. He could function to a certain extent but was so unaware. My retired husband had demonstrated signs of A/D over the last year and I am scared. I dont know how i should proceed..what to plan etc. My mother lives with us (8 years) . She has dementia and is very OCD about her schedule.

thank you Tam

For the question of who makes the diagnosis of dementia and which dementia it is (so far 48 different diseases have been identified and each of these have subtypes), you would look for a geriatric psychiatrist, a geriatrition (an MD specializing in aging) or a neurologist specializing in dementia.
The dementias are ordered in number of occurrence, so the largest disease group is Alzheimer's (official name is Dementia of the Alzheimer's Type or DAT) -- 4 subsets, Lewy Bodies Dementia -- 3 subsets, Vascular Dementia -- 3 subsets, Frontal Temporal Dementia -- 9 subsets, Parkinson's Dementia -- 2 subsets, Wernicke-Korsakoff Dementia (alcohol dementia), Huntington's/Huntington's Chorea -- 2 subsets, Creutzfeldt-Jacob Disease, etc. This grouping of dementias account for approximately 92 percent of all the dementias.
It is recognized that different presentations of disease behaviors alert physicians to specific dementias. A full battery of testing for any dementia would include blood work specific to dementia, PET scans, EEG, EKG, CAT scans, MRI, cognitive exams, etc. Dementia is not diagnosed by a simple set of questions. (A definitive diagnosis for Alzheimer's can be made with 100 percent accuracy through a spinal tap.) For a doctor to make a diagnosis, he or she takes the symptoms presented, the results of testing, rule out everything it cannot be and the end result should be the correct disease. Without a spinal tap for DAT, the diagnosis is still considered to have a 96-98 percent accuracy if the full battery of tests were completed.
But many of the behaviors you describe would point more towards a Lewy Bodies dementia. And LBD is most commonly misdiagnosed as DAT several times before a correct diagnosis is made. LBD frequently has a Parkinson's attachment, which is not understood, but is recognized. In some people, PD presents first, followed by LBD. In other people, LBD is diagnosed first and the PD symptoms begin later. Some people do not develop the Parkinson features.
Mixed Dementia is a subset of Vascular dementia. It means damage from stroke activity (large, medium or smalls strokes or a combination of strokes) has caused Vascular dementia and now Alzheimer's has crept in as well. Therefore this dementia is a "mix" of two dementias.
It is not unusual for people to have more than one dementia. And it is not
uncommon for a person to have features of Alzheimer's as well as other dementias. Research is indicating that if a person has one form of dementia and lives long enough, Alzheimer's creeps in as well. This is believed to be due to the failure of the Tau protein found within the cell structure and this collapse of the Tau protein is common in many forms of dementia.
As for the mini mental status exam -- the MMSE, this exam was developed to check for orientation, not cognition. By the time a person scores poorly on this exam, the dementia process is typically quite advanced. Doctors continue to use this test because it is the test insurance companies recognize and pay for during the doctor's examination. A more useful testing tool is the SLUMS test or St. louis University Mental Status exam. This test was developed specifically to measure for cognition and is available to download.
By late stage five on the DBAT (dementia behavioral assessment tool) all dementias begin to be very similar. This is because the damage to the brain, regardless of the type of dementia is significant. Stage five people for example have lost 1/2 pound of brain tissue in the beginning of stage five, but a pound or so of brain tissue is gone by the end of stage five. People with two pounds or less of brain tissue tend to have similar behaviors and declines towards end of life, which is why late stage five, stage six and stage seven are about the same for any person regardless of the type of dementia.

Scared-
I am so sorry for your loss. It is certainly a journey when caring for someone, regardless of the reason.

My experience with my husband's Lewy Body Dementia might help you a bit. Originally my husband was diagnosed with Parkinson's because of a tremor. A few months later I told our doctor that his memory and personality had changed so dramatically. At this point he wasn't taking any medication. Shortly thereafter, he did start on meds for the tremor and Alzheimer's because a brain scan showed signs of Alzheimer's. My husband's then neurologist offered no testing; nothing. After a major episode last December, a visit to the ER, another totally unhelpful visit to his neurologist and finally a return visit to our PCP, we went to see a neurologist suggested by our PCP. This man spent over 2 hours with us on the initial visit...far more time than the previous neurologist did in all the visits we had with him. He asked a LOT of questions, did some basic in-office testing and sent my husband for a battery of tests over the next month or so, including testing with a neuro-psychologist. In the meantime, he stopped the Alzheimer meds and increased the Parkinson's meds which ended up being an experiment because after another month or so, he concluded...based on all the tests...that my husband had LBD not Alzheimer's or Parkinson's. The meds that he had been taking were stopped because they were making things worse, especially the hallucinations and paranoia. His meds were adjusted and he did well for a couple of months. Sadly, by the end of June, my husband's condition had deteriorated so badly. He couldn't walk. Within a month he was in the hospital with renal failure, then to a rehab to try and get him able to walk, swallow and do more. Unfortunately, my husband didn't respond. He developed a horrible wound (bed sore) which I believe had been festering for months. Only 3-1/2 months went by before my husband passed away last week. The point I want to make is this: find a neurologist that really knows his stuff. Talk to people; get on the internet; learn all you can. Observe everything that goes on with your loved one; document everything. When you see the doctor, take your notes along. Ask questions. Allow the tests to be done; they aren't invasive. It's unfortunate that we don't know more about these diseases and they can't be accurately diagnosed until closer to the end. There are so many "signs" that no one recognizes or chalks up to "old age" or something else. By the time you can get a more accurate diagnosis, it's too late. There is no cure; we can only try to make their quality of life better for whatever time they have left. Remember, it's the QUALITY that counts, not the QUANTITY.

We took our mother to University of Southern California (USC) and saw a Neurologist in the Neurology Department, who diagnosed her. All we really found out was it was caused by her brain shrinking but she does not have Parkinsons,

there is an excellent class, completely free, online. Google Coursera, the class just started and is taught by Johns Hopkins. The class is called Care for elders with Alzheimer's Disease and other major cognitive disorders. There are a number of us here from Agingcare taking it.

Annice, the only answer is to try and see. For some people it is. For others it isn't.

annice, the goal is always to improve/maintain quality of life. If a medication has a side effect the question must be "is the quality of life better or worse with this drug and its side effect?" That has to be decided on a case-by-case basis.

Are the medications worth the side effects A/D?

I'm not surprised about sugar "causing" dementia. My grandmother had Alzheimers, a poor diet, and a major sweet tooth. My father also had some type of dementia (never diagnosed), a better diet, but also a major sweet tooth. My husband, who has Lewy Body Dementia, has the king of sweet teeth (not just tooth, plural teeth). He was a bachelor for many years, and his idea of lunch everyday all those years was a handful of candy bars. He is pre-diabetic, and the last thing I need to deal with is another medical issue on top of the LBD. So, I try to control the sweet teeth by hiding the sweets and alloting him one sweet per day.

As for the mini-mental exam someone mention, I read somewhere that by the time you test low on that you are pretty far into dementia. I found a website that has a self-administered test that is supposed to catch it earlier. I wonder why doctor's don't use it, unless they think it is better to not know sooner. There are four versions of the test. I take one every few months to make sure I'm not loosing my mind. Here is the website if anyone else is interested in checking it out: sagetest.

Other thing that has been connected to dementia is chemical exposure. The VA covers Agent Orange exposure, which they have linked to Parkinson's and it has a dementia component. The VA is also doing a study to see if there is a link to other chemicale xposure to other neurological disorders. I wouldn't be surprised by that either, since so many of us Baby Boomer grew up with the beginning of chemical use, when our houses and our food were fumigated, and they still are, but they tell they are currently using safe chemicals. Really???

They are also making some links between dementia and viral. Google Alzheimers and herpes simplex or go to HIV-associated dementia in NeurologyNow. It makes some sense, when you consider what a bacterial infection does to someone with dementia.

So many links yet so many dementias. Who knows, maybe its a combination of stuff. But too much of anything is not good for you and maybe sticking to organic foods is a good idea too.

Sharyn, Given all you've shared about your mom, I can't believe that the doc is telling you it's normal brain shrinkage.... yes that does happen with age, and normal forgetting goes with it, but based on your mom's behavior and such, I don't know. There are tests that can be given to determine where the cognitive function is. Google Mini Mental Response Tests, and you'll hit on a bunch of things. My mom's doc gives her one every time he sees her. Sometime she does very poorly, and sometimes she does a little better. It depends on their mood, whether or not they're tired, when they took their meds, etc. They are good tools to get a general idea, but they are totally subjective. My mom can still rattle off her social sec. #, but she can't remember more than 1 or 2 of the words he gives her for the recall part. There's so many different kinds, and the questions can be changed however the doc wants to use them. What I don't like about those is that the doc prompts her with clues when she makes a mistake, and eventually she gets the answer. That counts as a point toward the score. Somehow it seems to me that him helping her until she gets it defeats the whole purpose. Like I said, she can remember her social, or where my father worked 50 yrs. ago, probably because it's stored in her long term memory. She could have had breakfast 30 min. ago and she asks when she's going to eat, because she hasn't eaten since at least yesterday.

Well... my brother should be arriving at mom's any time now. I have been dreading this visit soooo much. I told him that I wouldn't see him until I picked him and mom up on Friday to go to her doc. appt. Of course mom is already a basket case because she's sure that he's coming down so that we can put her away. I've been so stressed these last few days. I talked to my brother on Sunday and he starts telling me how the GC talked to him and when he asked how mom was doing she told him that he'd see a difference since his last visit, but that she's doing well. I adore the gal, and know she loves my mom so much, that it'll be very hard for her to see mom get upset and carry on when we do move her. She told me that she was so worried about her having a heart attack or stroke because she'll be so upset. Of course, if she told my brother this he'll again try to put off moving her. He all but called me a liar on Sunday when I told him about things that had gone on over the past couple weeks. Two of my mom's neighbors were over and I guess mom went into her melt down, telling them that I want to put her away, and that's why my brother is coming. They of course told her that they thought she was doing great, and that she had Maria(CG) and they think she should be able to stay in her own house. They told Maria that I'm too involved and that I worried too much. Really???? Mom can't remember to flush the toilet anymore, or take her meds unless someone hands them to her and watches her swallow them. She wants to wear the same clothes everyday, and refuses to use either her walker or can like her doctors have told her. She argues with the CG about everything because even the suggestion of doing something she doesn't want to do set her off. She doesn't use the walker even in front of me, and if I bring it up there's an argument. Don't you know that Maria told me that mom has been using the walker since Mon. Of course she is..... I'm beginning to think the she is feeding mom the line about us (ME) putting her away when I brother comes and that she better be good or else. I think I'm caught between a rock and a hard place.
I'll catch up with ya'll when this nightmare is over.... he's leaving on Monday.

Sharyn, I just remembered something..the neurologist gave mom some questions and memory tests. She had problem remembering the list, nor the order he gave it, etc...I think before your next visit to the Neuro, best to read up as much as possible on the different tests to determine Alzh.

We just got the results of my mother's MRI done through a neurologist, it shows normal brain atrophy for her age but no dementia. I still say she has Alzheimer's and since an MRI is not going to show that, we wait for the neurologist to call to decide what to do next. Maybe a neuro-phys exam?? Come on, she can not function by herself anymore.

Tooyoung, Mom is taking meds for PD, anxiety, depression, memory, and Seroquel at night for sleep. She was OCD her entire life. It just got more noticeable and worse with the dementia. And I'm not talking about counting or touching something so many times, or even constant hand washing. It's constant motion, like touching, grabbing, banging on her food dish, trying to get off the toilet every other second, literally! She drives herself into a frenzy if she sees a spot on the floor and will try to reach it from her wheelchair sometimes for an hour or more if I don't get it out of her sight! All 7 of her children, including me, have a touch of it in some area, but I have 2 sisters that have actually been treated for it. They also have her depression and anxiety and have been treated for both for most of their adult lives. I did not get those genes, but rather my dad's. I have autoimmune disease and several of the "side affects" of it, but my mental state is usually pretty level and steady. I would not be caring for Mom if it wasn't!
Glad, Yes, I try to tell everyone dealing with dementia patients to cut out the sugar!!! If we can get "brain fog" can you imagine what it does to someone with dementia? I have seen what it does and can do and have since convinced the CNA that helps with Mom that it is true! She has 15 years experience working with Alzheimer and dementia patients and never heard of the correlation between to two! She knows now and has stopped bringing Mom sweets from home.
Sugar may fatten up a normal person, but with my Mom, it just made her crazier and it burned off all the good calories we were putting into her.

I too, notice a significant difference in my mom's behavior and functioning when the sugar intake is lower. I stopped giving her added sugars about a year and a half ago and also cut way back on the sweet stuff. She gets sweets rarely now. I mentioned this to the staff at a day program I take her to, they have now also cut down on sweets during holiday parties for everyone.

One motivator to cut down yourself, google the relationship in developing dementias and sugar intake and other junk food. Here is a link for starters:
http://health.msn.co.nz/healthnews/8525112/eating-junk-food-could-cause-dementia

deefer12, I think a lot of us look at those we are caring for a fear it will be us, and possibly sooner, because the caregiving wore us down before our time. I wish we had expirations dates and would just die peacefully in our sleep when it was our time.Sorry, that was depressing, but I that's the way I feel.

Deefer12, you only mention two meds. dabs4mom mentioned anxiety and depression, paranoia, etc. Your mom might be suffering from one of those, and in her dementia it shows up as OC. I know my husband, who has LBD, get a worried and asks questions over and over. He is better with an anti-anxiety med. As jeannegibbs said, the only option we have is to treat the symptoms.

Dabs, Mom has been on the same med combo for about 2 years now and it seems to continue to work as well as we can expect at this point. I recently changed her diet by eliminating most sugar. Got plain oatmeal instead of flavored, got rid of cookies and other desserts and sugary cranberry juices. She is remarkably more alert and her cognition is much better. I give meds to her with applesauce and now buy the unsweetened. I get "light" cranberry juice and cut it with water like I always did. I buy no sugar added canned fruit and fresh bananas and light yogurts for desserts and snacks.
The difference in sugars in these products amazed me! Applesauce is 20+ grams of sugar where unsweetened is 10 grams. Oatmeal is 0 grams and flavored is 12 grams. Cranberry juice is 36 and no sugar added is 39!!! Light juice is 12grams!
I now add applesauce, bananas and canned peaches to her oatmeal and when I make pancakes, I cover them with the cottage cheese and fruit combos. She is definitely better off without all the sugar! Less problems with UTI's also, as bacteria loves to feed on sugar.
The paid caregiver was feeding her all kinds of sweets and desserts to "fatten" her up, but I noticed Mom was getting worse than usual. I told her to stop bringing Mom glazed donuts and other junk like candy bars, but she would still sneak some in occasionally. Finally, after being fed way too much sugar in one day, Mom crashed and was acting really strange. So I put my foot down and got rid of all the junk in the house and checked labels on everything I buy for Mom. Within a week we all saw a drastic change in her personality and cognition. She is still in late stage dementia, but can now function so much better without the sugar. I have since read up on the subject of sugar and the affects on dementia patients and am glad i made the decision to cut most of it out of Mom's diet. Now I need to get it out of my diet!!!

Wow! This group has so many well informed members. Good stuff! I totally agree with everyone about the difficulties getting a correct diagnosis. I find it all too amazing how PD, LBD, and AD can be so intertwined. For sure there is strong evidence that LBD and PD can present as either at the same time, or one before the other. Either way the right diagnosis is tricky to get. Sometimes a PET scan can show evidence of Lewy Bodies in the brain, but not always. An MRI can't.
Living through this with my mom, like so many of you, we see symptoms come and go, change and evolve, respond to treatment or not, and behavior that sometimes leaves us feeling defenseless and overwhelmed. One thing for sure...it is apparent that no matter if a true AD or VD or Mixed Dementia, all we really have available to us right now is the ability to treat the symptoms with the approved drugs for VD and AD, and support those with meds for the depression, anxiety, paranoia, mood swings, sundowning, etc. and hang on tight, and to each other. A good neurologist should be able to choose the right combination, and find a good balance in the meds so that our loved ones are safe, comfortable, and most certainly NOT OVER MEDICATED. Mom's doctor is great, and has tried different combos in small doses until found the right mix. We both know that in time that mix will have reached is max ability to help, and then we change the plan. I think the most important thing is that no matter what the diagnosis with any of these diseases constant evaluation and change in a care plan is critical.
Thanks for all the great conversation.

It has been over a year since we tried her without, so that may have changed some, but I'm not willing to take her off to see what will happen! She has had trouble with cognition for the last 2 years and I think a big part of that is how easily she is distracted. When we toilet her, she constantly tries to stand up. She pushes herself up with her hands every other second, and I'm not kidding on the timing. I by underestimating if I said she did it less than 20-30 times a minute! And the entire time I am washing her, she is grabbing anything and everything in sight! Sometimes I just have to remove anything in her line of sight so I can get her ready for bed. In the morning she is more cooperative, but by the time I get her into her wheelchair to feed her breakfast, she is cranked up and ready to run! It's like she is trying to do 20 things at once and I have to calm her down to get her to focus on eating her breakfast. It's a wild and crazy ride and by the time I get her to daycare, I am fried!
Mom only weighs around 102, but is 4 " taller than me. So it takes all my strength to haul her out of the wheelchair and into the car 4 days a week. It's especially difficult when she stiffens up her entire body and won't bend to sit down.
I have been suffering from RLS for over 20 years and have been on Requip for the last 7 years. It's dopamine, the same thing used for PD and I'm really afraid that I will be my Mom in 15 years. It's not a happy thought to live with.

Some Alzheimer's drugs work much better for LBD than they do for AD (less brain cell death) so it is interesting that your mom still does better on them.

her depth perception is almost gone now.She reaches for things that are too far away for her to get and just sits there with her hand out trying for sometimes an hour or more to reach for something she can't. She had many falls at the beginning due to crossing her legs at the ankles when she would stand up and turn. The hallucinations started after being treated with sinamet. I don't remember her having confusion and then being okay. She had major depression and lots of anxiety attacks which would incapacitate her something awful. She could no longer go to the grocery store with me as she would have an attack and hyperventilate and drool, and her nose would run and she would just get that "mask" look that I just read about on that site. She would get up not long after going to bed and be so quiet, I wouldn't hear her, When i would check on her, I would often find her on the floor where she had fallen and couldn't get back up.
she had 2 bad falls that sent her to rehab and after the second time, I quit my job to stay at home with her. that was 5 years ago this May.
So with a quick scan on that site, I am more confused than ever! I know she is at the point where nothing will help her now, although she does very well on Aricept and Namenda. We tried to take her off them due to her advanced state, but she was totally gone without them. Once she was back on, there was noticeable improvement. I tell people all the time that if a doctor tells them these meds won't help, try them anyway. Most people I know that are taking them do much better.
I have to say the worst for me is the OCD traits, as they are constant and never ending and enough to drive a person insane!!!
Thank you so much for your input and I will talk to her doctor when we see her in May.