Dementia diagnosis is postmortem only...myth or no?

Hello jujubean, The others have said most of what I can offer, in that dementia is really just a general category of neurological/brain dysfunction, with Alzheimer's and Lewy Body, and Parkinsons being specific types. Very little can be gained from pinning a name on the dementia (even if possible), when in most cases the treatment will be the be based on the exhibited symptoms anyway. With my mother, I took her to the her GP, and to a neurologist, and a psychologist and a psychiatrist, among others, at various times in the progression of her disease. I started early, (at least as soon as I could argue her into going). Near as I can tell, nothing did any good whatever. More likely all we did with the Aricept, Excelon, Namenda, was to drag out the progression of the disease, making a long miserable process even longer. It was probably 13 years from my first attempt to get a doctor to believe there was a problem, until she died of the disease. If she had died sooner, of a heart attack or stroke so some other, it would have been a blessing for her, and everyone involved. BTW I felt like calling the first docs jackasses also, when they refused to believe me, that there was a problem. But in those days, I believed there would be help, if he could see the problem. Took a while to learn that there really wasn't any. ....Well now we're going through this again, with my Dad, and I don't intend to go dragging him around to a slew of extra doctors searching for help that isn't there. His general practitioner is ordering pretty much the same drugs all those specialists ordered for mom, and that will be good enough. It's misery enough having to argue him into visiting all the other doctors that he needs (heart, vascular, hearing, eye) with out the battles needed to force him into seeing psych and neuro docs.....Anyway, I just want to encourage you to not second guess your actions. You did your best with what you knew, and had you done differently it was not likely to have improved the outcome.

Dementia can creep up slowly without anyone noticing. Ten years ago mom stopped reading novels, stopped getting news papers. Gave up sewing after five different sewing machines "didn't work". Five years ago she stopped twirling spaghetti and started cooking other pasta. Dinners became simpler, more often things got burned. Nobody noticed the dings on the corners of her car, the crushed ladder in the garage. Appliances "didn't work", the bread machine failed. The cupboards began to fill to overcapacity, and so did the closets. Payments for bills were all the fault of the water dept or the gas company. Finally she screwed up her medications and landed in the hospital. We overlook too many small signals until it reaches crisis point.

The doctor said Mom had dementia and we didn't have to jump through hoops to find out.

Well dementia can be diagnosed at any time, but proof- positive can be found in the post-mortem........autopsy report. Some report that it is caused by placque on the brain, others find that is caused simply by old age. No one really knows. There are studies that blame some drugs taken over time by pt's who have dementia...... Satins and others. A simple life, filled with happiness is the best deterrant to dementia. I'm not a fan of drugs. I find that caregivers/therapists who insist on patients doing cross-word puzzles and math puzzles create a cruel platform, thinking that this will help or "cure" the dementia. It will not.

Cinderbarb, If the meds help, and if Mom has good drug coverage, they can give her a longer time of being more with it. Consider doing a trial of Aricept or something, because it can improve things. Stop it right away if the side effects are a problem. At first it caused my husband constipation, but that problem seems to have just gone away, and he does seem more capable.

Our last visit to the ER, the doctor was really good, told me that she had plague build-up in her brain and to give her the low dosage aspirin due to her age (86). The visit before that to the ER, cause mom had fallen and we wanted to make sure she was alright, they treated her for a UTI, which she didn't have, put her on meds and kept us there all day. Her new PCP stated that she had Alzheimer and asked if I wanted meds for her, they wouldn't stop the disease or make it better, so as of right now she is on thyroid and blood pressure meds along with the baby aspirin. We have our good days and our bad days, child gate put up outside off the deck, so she doesn't go wandering any more, knobs off the stove at night, and only food that she can eat in the fridge and snacks on the table for her.

Human beings weren't "designed" (by God or evolution) to have a long life span. In the old days, a very few people lived into their 90's or 100's, but they were always the exception. In 1900, the life expectancy was 46.3 years for men, 48.3 for women. In 1950, it had increased all the way to 65.6 and 71.1. In those days, the people who would have gotten dementia died of measles or tetanus or childbirth or appendicitis while they were still young.

Alzheimers is just one of the ways our bodies fall apart, like cancer is. It's worse than some. I personally fear type 2 diabetes more because it would require me to have structure in my life and diet, an that's like poison ivy to me. (You can tell I don't have any real experience yet, can't you?)

I had cogntive side effects on a low dose of lovastatin and had to quit it. I supect it could have been a factor in my mom and dad's decline. For my mom, I'm almost sure it was, because she inadvertantly doubled her dose and had multiple risk factors for the rhabdomyolysis associated with the fall at home that permanently ended her independent living. Both my parents were the type to not really pay much attention to the meds they were taking and just kept on with anything they were prescribed regardless of any side effects.

The FDA now officially recognizes that this can occur, but it seems none of the studies on prevention of atherosclerotic disease include anything for the statin-intolerant. Most people don't have either problem, and it appears cognitive side effects are not as common as muscle side effects. I am hoping that someone will do the genomic study to figure out who is at risk for the cognitive ones in advance, as they have done with muscle effects to a degree, since the statins are recommended for nearly everyone now, as the benefits to the population as a whole continue to look so good.

My father passed away from dementia, so did his father. My father came to the U.S. from N. Ireland. They both were alcoholics, however their dementia was not vascular as one would expect due to drinking...it was Alzheimer's. Neither had surgeries in their lifetime...what could have caused it?Who knows, other than genetics. My mother has Alzheimer's now, she is from a family with 8 children. Both her parents passed away in their late 70's due to heart issues. My mom is the 4th sibling in her family to develop Alzheimer's. The 4 that have developed it, have lived into their 80's and older. The other 4 siblings passed away in their 60's and early 70's from various other diseases. Mom refused to take statin drugs, again what has caused this? Lifestyle, environment, genetics?? Growing up I heard many stories of elderly people who were labeled senile, was it dementia as we now know it? I think it has always been here, we now have more advanced ways of diagnosing it than back in the 40's-70's back then people just accepted it, didn't look for answers and never talked about it. We have a larger population of elderly people now and with medical science being more advanced, the diagnosis is more common. Maybe someday we will have more answers other than genetics. When I was growing up, cancer was the big scare, they were just starting major research on it and treatments, do we really know much more about the causes than we did 30 years ago...genetics, diet, environment?

It is all too common for those of us who are caregivers to want to assign "blame" for a condition to make us feel better. As yet, there is no one who can prove what is causing the dementias in people and until that day comes, everyone is at risk for developing a dementia either early onset or after 60s. I don't know what "caused" my husband's memory impairment and I have medical training. Yes, I have thought his being a pilot (radiation is higher at higher altitudes), or the stress of three wars and being exposed to Agent Orange, asbestos, and radiation from carrying the Atom bomb, or was it the T.B. he contracted in Africa while flying commercially, or the pancreatic sarcoma? I have searched for answers until I can no longer question the why of the disease, just that it is. It is much easier that way and a lot less stressful. He takes no medications. The prognosis is still the same.

My Mom has dementia also, progressing more quickly these days. Just over a year ago, I made the decision to move her into a nursing home (after the last of many fall-downs) realizing she was no longer capable of taking care of herself - not only due to her memory problems, but poor personal safety behavior, improper food handling, and severe physical impairments affecting her balance and walking. She still thinks she is "perfectly fine" and expects to be going home "next week". Believe me, I took care of her until I was ready for a physical/mental breakdown myself. I kept records of her behaviors to show the doctors (others here have said that the doctors think the patients are fine, and they magically seem so during the visits), I couldn't begin to make this stuff up - the lists really helped because I couldn't count on remembering the sequences of events surrounding her behavior (due to my own mental stress). Those behavior descriptions helped the doctors make a proper "working diagnosis" of her condition. Coincidentally she had brains scans while in hospital that showed the brain deterioration consistent with dementia. Long story short - I don't understand what purpose it serves to do all this testing, provided that you can ascertain that drug interactions are not causing the problems.Dementia/Alz are not reversible, and pretty much hereditary, so why would you want an autopsy to prove what you already know? I think the best we can do is follow a healthy lifestyle, good nutrition and extra supplementation, like Omega-3 with substantial DHA, Co-Q10, antioxidants, etc. the kind of stuff that feeds the brain and keeps it healthy. These days it's so easy to do this research online to help ourselves. We may get lucky, or not be able to escape it entirely. But we certainly can ward it off as long as possible, or at least reduce the severity of it in the long run. Please don't misunderstand - I am not being critical - everyone here deserves our support. This is a horrible disease to deal with even if you have the best care and support that money can buy. I am just offering my viewpoint regarding the testing and autopsy issues.

wow Brandy just read it, amazing, FYI
virginiahopkinstestkits

Two, I agree it is the statins. Just look at what Julian Whitaker has to say about it on his website. My dh started to go down hill as soon as he started to take statins. Lipitor in particular.

We tried to get a PET scan for my husband to get a better idea of the type of dementia he has since he isn't believed to have Alzheimer's. Unfortunately the scan is very expensive and my husband's psychiatrist/nurologist at Mount Sinai couldn't convince Medicare to pay for it. Since my husband is part of a study at Mount Sinai, he will get an autopsy which will determine the specific type of dementia he has. The only reason I can think of to want to know is to have more of an idea of whether this is likely to one of the forms of dementia that has a high liklihood of being inherited. That is something that our adult children, neither of whom have had children yet themselves, might want to know.

my husband had MRI and PET scan, they show atrophy, which happens to everyone as they age, but his was always diagnosed as shrinkage being somewhat more than it should be for a man of his age. My original thought, and I feel is still the reason his memory started and continued to deteriorate is his taking statins, has anyone read Lipitor- Thief of Memory?

Google spacedoc - lipitor thief of memory
drugs were mentioned as a possible cause earlier in this thread, I believe there is something to this.

Jujubean-You asked specifically about "dementia" being correctly diagnosed. There are so many types of dementia the old school of thought used to be one could not put the "Alzheimer's label" on the dementia without an autopsy. According to the researchers and neurologists in AZ I have talked with, they now can. With regard to testing which I mentioned I have done, I did not mean I paid to have genetic testing. I am a research subject for Mayo Clinic as well as a consortium of (6) others that gave me a PET, blood test, and every two years Mayo puts me through a battery of all day testing which includes number sequencing, visual pictures, drawings, well, it goes on farther, and it is exhausting. My least favorite test is listening to a recorded voice which gives 3 numbers, you then add the first two, say it before the voice says 3 more, which have to be added to the previous last number to get the new number, and then goes on. The speed at which one does this starts out slowly, then increases to a very fast speed. It is really mind boggling! Anyway, I realize genetic testing is expensive and the doctors stated at the May conference I attended, even if you test positive for the APOE4 gene, you may escape any dementia. My advice is just to take care of yourself to the best of your ability, and if you get a dementia, then you get it. I have already donated my brain postmortem so the researchers at Sun Health Research Institute may study it. Of course if one absolutely must know what the person died from, then an autopsy is an option.

You can officially diagnose dementia by the clinical history, but to definitively diagnose Alzheimer's dementia you need an autopsy. You can suspect Alzheimer's, by ruling out the other causes of dementia, but not prove it yet.

Dementia can definitely be diagnosed based on neuropsychological testing. However the type of dementia cannot be definitively diagnosed until autopsy. Alzheimer's Disease is the most common type of dementia but not, by any means, the only type. Some people have dementia that is vascular, i.e., caused by a stroke whereas others have FTD such as Lewy Body DemtenIia or Pick's Disease. Doctors often try to make their gest guess about the type of dementia since some medications that are given for Alzheimer's Disease are not indicated for Lewy Body Dementia. However, It is not uncommon to discover at autopsy that a person has more than one type of dementia.

actually from what I understand there are doctors out there that deal with dementia, not sure if it is a neurologist or just a specialist. If you go on the computer and search for dementia/Alzchemier's that is a bunch of information. From what I understand they can only determine dementia after they do an autospy, but that is not always right either. Due to the fact they can't really tell if it is dementia or Alzchemiers. My mom was diagnosed with dementia, come to find out after the last trip to the ER, we found out that she has plague build-up in her brain. Nothing they can do for that but give her the baby aspirin or the 82mg of aspirin. We are dealing with it as best we can. She went walking one morning and I found her about 1/2 way up our long driveway and the neighbor drove around her. Now the gate goes across the ramp at night to keep her from roaming.

Good luck and find a new doctor, one that will listen to you and help.

I wish every doctor in the world who sees people with mild cognitive impairment or dementia would read this whole thread and realize what a HUGE difference an accurate diagnosis can make. It should no longer be common for non-Alzheimer's dementia to be missed because the memory is not as badly affected as the judgement or other cognitive skills. There is ample information for lay people and professionals alike about FTD, Lewy body, and vascular dementias all over the internet. Some doctors have simply not kept up. It is still common for people to think their loved one has just turned mean, stupid, or paranoid rather than having mild cognitive impairment or early dementia, and still common to hear that someone who has suddenly and uncharacteristcally started making awful lapses in judgement or social behavior is "just fine...has all their marbles." To be sure, for some people dementia, (or maybe depression, which can masquerade as dementia) just makes previous difficult temperament or narcissism that much worse. The old saying about not having a diagnosis until post-mortem is just that - an old saying. Neuroimaging and functional cognitive and motor testing can usually put the diagnosis into the right ballpark. Jujubean, at least they had her on meds that might have helped a little, but I think it is very sad and very unfair that they could not give you the information that would have helped you with her A LOT.

Oh, Yes, Ferris...Genetic Testing is expensive, but it may open some doors to our predisposition to certain anomalies and diseases. If a patient is SYMPTOMATIC, I may suggest going ahead with the genetic tests. If not, I'd let it go and keep close watch.....take my chances.

The post about anesthetic is interesting. My husband had 2 neurosurgeries about 6 months apart and lost a lot of cognitive functioning thereafter. At first I thought it was because he spent 3 weeks the sub-acute rehab floor of a nursing home where he was in bed for most of the day. I had hoped that once I got him home with more mental and physical stimulation, he would recover what he had lost but he never did. While I still believe that the nursing home stay caused a lot of regression that ended up being permanent, perhaps the anesthesia from the surgeries was a factor as well.

There is a known connection now, between the number of times a pt has been put to sleep under a general and the risk of dementia. Studies are still not completed. Makes sense to me. I'll have to check this out with Dr. Amen.

My Dad was initially diagnosed by his general practitioner following some testing that included answering questions, writing, drawing, etc. He was immediately sent to a neurologist and has been under his care for about 4 years. It does not take an autopsy to diagnose Alzheimer's or other dementias. It often DOES take an autopsy to discover exactly what type of dementia a person actually had, as the symptoms of the different types often overlap. For instance, my Dad was diagnosed with Alzheimers, which makes you immediately think of loss of memory; atypically, he can remember things that happened 50 years ago, along with people he knew that long ago. Unfortunately he has hallucinations on a daily basis and has very diminished motor skills. My Dad had an MRI two weeks after he first visited his neurologist. We were told it looked normal; I'm thinking the neurologist was looking for signs of stroke, etc. I think as the patient worsens, brain scans can show differences in what parts of the brain are being used and how that use has diminished, but I don't think scans can tell anyone exactly what type of dementia a person might have. In the long run it really doesn't matter anyway. Dementia is not a curable disease (yet). The best we can do is medicate if possible and hope that they do not have to suffer a long and debilitating end of life.

I may be of some help as I (as a nurse) asked this very question of my husband's neurologist. He had to put a code on his diagnosis for Medicare and it was "Dementia, Alzheimer's type". I don't think nine years ago the researchers had the technology nor the knowledge to diagnose Alzheimer's. However, with so many cases presenting with similar symptoms PLUS the EEG, MRI, PET, and CT scans, radiologists are better able to predict what type it is. The alpha waves will present a certain way, the behaviors, and all of it gets put together in order to make a diagnosis. I cannot believe you have not seen a neurologist before the nine years of taking Aricept and Namenda. Both those drugs are usually prescribed by a neurologist who knows what the diagnosis is and it is already documented. Both drugs will not slow the progression and the neurologist you are now seeing is correct in that this is a terminal illness. The latest trial going on right now is called "Tomorrow" and they are given a vaccine to 30 yr. olds. One needs to start early the researchers are thinking because if you have a genetic predisposition (APOE4) you have a 25% chance of getting dementia yourself. So get yourself tested early and try to eat healthy and exercise every day. That's what I have done. Best wishes!

Absolutely not. Many diagnoses take place based on symptoms. That's the best we can do. There are tests, of course. A post mortem merely CONFIRMS the diagnosis. It also confirms the cause. I still think that the MRI is the best test that we have, better than the Scan.

I believe as we age our whole being ages. Our skin, our bones and our brain. Some are very fortunate and make it without losing cognitive function. The most helpful tool for me has been the internet , sites like this and support groups. I absolutely would not take my 85 YO Mom to a neurologist. For what? I knew long before we got an official diagnosis she had dementia. I took her to a geriatric MD just so we could get medicare services. I read read read about how to deal with this. Some days are good some suck. I never yell or show her my frustrations. I hug her and tell her I love her everytime I leave ,even if shes's said crazy things. She has home care now but who knows what will happen in 6 months. Don't depend on medicine -there is no cure. It is life and it sucks. Hugs to all of you....

Elders are both underdiagnosed and overmedicated.

My mother -in law has always managed to "pull up her big girl panties" and pass the dr's ridiculous test. Even though I gave the doctors longs lists of all of the behavior changes I had noticed ( an there were a lot, losing jewelry and calling the police to report a robbery,ordering dish TV, letting the technician in and then not know who he was or why he was in her home I could go on and on) But according to the doc if she could answer his questions right then there was nothing wrong . with her. This year because of a problem with her blood she had to be taken off most of her medicine that she had been on for years. For the first time in several years she can carry on a conversation. Her dementia is still there but she is better. Makes me wonder how much of these problems our elders are having may be related to the drugs they are taking.

Two years ago the doctor told me that mom had dementia. Like I didn't already know that. She has been acting strangely since 1972.