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

What I learned taking care of my mother in her late 80s in my home was this. My mother was turning mean, resisted new things (even though in wheelchair), and I thought she spent much of her time lying to me. 4 years into her care, I had to either put her in a nursing home or lose my sanity and my husband. In order to do so, I had to get a diagnosis, etc. from the health officials and they came to my home and gave my mother several tests. To my astonishment, she had no memory of things she had just said to the nurses, she couldn't tell them simple things (like the year or the President who she sat and watched on TV every day); to be short, she immediately was diagnosed as having dementia which qualified her to go to the nursing home.

I am like you, very pissed. I had my mother to the doctors several times a year and she was in the hospital several times a year. If one professional doctor had even hinted to me that she had dementia, I never would have taken her actions personally as "meanness" or interpreted her forgetfulness as lies. It deprived me and my mother of what could have been a much closer bond during a time that she was in my home. Unfortunately, it was too late and she did go into the nursing home and died 3 days later. Think I don't have guilt over things I could have said or done differently? Please everyone if you are reading this, press her doctors for more of an understanding of what your parents have and what some of their actions really mean medically. It will save you some heartbreak.

Dementia can be relatively easily diagnosed using standardized tests of cognitive functioning and observation over time. What often can't be diagnosed until autopsy is the cause of the dementia. Alzheimer's Disease is the most common form of dementia but there are many other types and a differential diagnosis can only be made postmortem.

My husband has dementia that is not believed to be caused by Alzheimer's Disease because it didn't present like AD in that the memory loss was the last symptom to appear. First there were personality changes which got diagnosed as psychological problems and treated with anti-depressants which helped only slightly. This was a terrible time for me because my husband was verbally abusive to the point where I was ready to leave the marriage. Then the next symptom appeared, which was gait difficulties. It was determined that my husband had a gait like that of people with Parkinson's Disease without having the rest of the symptoms. As this was unfolding, I began to notice memory problems that were becoming more problematic. Neuropsychological testing diagnosed Dementia NOS (not otherwise specified - in other words, we don't know what it is) and Parkinsonism. There is speculation that my husband has Lewy Body dementia which includes Parkinson's-like symptoms together with dementia but we will not know for sure until autopsy. In the meantime, knowing the cause of the dementia won't really change anything. I don't blame anyone for not diagnosing my husband sooner because his dementia developed in an atypical manner. However, it might have gone undiagnosed longer if I hadn't taken the initiative to pursue formalized testing for dementia.

Here is why it is important to visit a doctor when you first start to notice dementia issues in yourself or a loved one:

Symptoms of dementia -- which we all associate strongly with Alzheimer's, Lewy's Body, FTD, and other such fundamentally INCURABLE and progressive diseases of the brain -- can also result from other, INITIALLY TREATABLE causes. These include vascular problems, mini-strokes, systemic infections, and even vitamin deficiencies. We're all so understandably afraid of Alzheimer's that when we see signs of confusion and memory loss in an elderly person, it's right where our frightened minds take us as the likely culprit. But it is extremely important to rule out these possible causes of a person's apparent confusion early on, or to determine that they exist and treat them ... because, for example, if a person is experiencing brain damage due to insufficient blood supply because of vascular issues, and you successfully treat the vascular issues, you will stop the progression of brain damage. If a person is experiencing confusion because of a physiological process relating to an infection or a vitamin insufficiency, and you correct these problems, you may see reversal (or at least an end to forward progress) of the dementia symptoms.

As I understand it, left untreated, physiological causes of dementia like this can do as much and as permanent damage as one of the "big" brain dementias that we all know and fear. (And yes, those can only be conclusively diagnosed at autopsy, but until then, doctors can sort of pinpoint them through cognitive testing/analysis to see patterns of impairment and brain scans that will show gradual atrophy of particular parts of the brain.)

So the neurologist in this event may have been (insensitively!) complaining that a physical workup (or, at least, in his/her opinion, a sufficiently extensive workup) wasn't done to rule out a physical cause of the dementia in the early stages, when treating such a cause (if it existed) might have contained or reversed the problem.

This being said, I'm guessing your (Mom?) MUST have had at least some kind of physical exam from at least her primary care provider, because you can't just buy Namenda and Aricept without a prescription. So I wouldn't beat yourself up too much about this. It seems unlikely that any doctor would have prescribed Alzheimer's drugs for short-term memory loss or other signs of dementia without first attempting to rule out the "easy to fix" stuff (even if he/she never explained that's why they were taking blood or urine or whatever).

My Dad LIKELY has FTD, based on the results of four hours of cognitive testing by a neuropsychologist and her analysis of the adults. His neuropsychologist said the patterns of impairment revealed by the testing are more indicative of a frontal dementia than Alzheimers ... however, she told me that it is not unusual where brain disease is occurring for multiple disease processes to be occurring at the same time ... so a patient could have primarily FTD, but also develop Alzheimer's. We could have gone farther and done a scan of the brain to confirm whether the atrophying was happening primarily in a frontal-temporal location, but I elected not to do this, as Dad is so stressed by doctor's visits, and I didn't see what this confirmation would do for us anyway, as there is no cure. The neuropsychologist agreed in our case, as Dad had had a recent physical relating to the memory and other executive impairments I'd noticed ... and also because she said the pattern of impairment revealed by the testing was very unlike typical impairment seen as a result of mini-strokes.

(Continued from my previous answer). For this reason, I have enrolled my husband in a study at Mount Sinai hospital so that he will be eligible for an autopsy that will tell us the actual type of dementia he has. As I said, this is mostly for the sake of our children and grandchildren since it will make no difference to my husband.

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....

My Husband has FTD which was diagnosed with a PT Scan of the brain. His Dr. is a specialist in that FTD....The way I understand it, this is genetic and there isn't much other than Namenda and Aricept to help it. Behavioral problems are helped with other meds..So, the Dr. who led you to believe you could have done more earlier for her was probably mistaken. Please don't let him make you feel guilty!

My husband's neurologist said that a PET scan would be useful in diagnosing the type of dementia he has but it is very expensive and Medicare has refused to pay for it. I guess I can understand why Medicare would deny payment of the test because the outcome wouldn't really change anything in terms of the course of the illness or treatment. I am not sure why it is important for me to know the exact nature of my husband's dementia other than to discover whether it is one of the ones that has a higher likelihood of being inherited by our children (and theirs).

In 2003-04 Mom (at age 78) began having severe delusions resembling deja vu (such as thinking a live TV broadcast was a rerun), confusion, and beliefs that people close to her were trying to kill her. Dad told me that the doctors subsequently diagnosed with paranoid schizophrenia. That is inconsistent with the typical onset of that disorder, which is in the patient's late teens or 20's. I suspect either Dad misunderstood something or a healthcare worker miscommunicated; what was meant that the symptoms and treatment were identical. (From Mom it simply must have have been hell on earth.) The psychiatrist put her on the antipsychotic Zyprexa. It worked extraordinarily well and the rest of her life was much more pleasant, at least psychologically. She lived only a year-and-a-half more, losing a battle with COPD aggravated by food aspiration.

The true etiology of her condition remained unknown. The standardized tests to which BAlexander9 alluded showed clearly that Mom had a form of dementia; it was not Alzheimer's because symptoms specific to that disease were absent. At least they were able to get a clear enough picture to help Mom - and that her mental illness occurred in this century as opposed to the distant past. Others are/were not so fortunate.

As you learned late in the process, they can determine dementia and what type an individual has. Can they do so emphatically, not until the autopsy. Dementia shares many symptoms of other neurologic diseases such as Alzheimer, Parkinson's and more. Once an individual is on this path, I personally don't feel the Namenda and Aricept make much (if any) difference. How early in the disease must these drugs be started to make a difference? My experience in getting the doctors to acknowledge there IS an issue with my Mothers behavior, speech ability and just the many little things that you as a daughter would recognize was difficult at best. He regular physician just told me she seems as usual and asked her the basic Alzheimer test questions which she was able to answer and thus no further testing was recommended. Speaking to my Mothers siblings of my concerns and my own siblings was also frustrating. They would talk to her on the phone and then render their own impression, which was always that she seems fine. Remember, with any one of these neurologic diseases you can have good and bad days. Good and bad hours in a day and so it took time to get the diagnosis. My Mom felt there was nothing wrong with her (fear of loosing independence, which I understand) so she was unwilling to see a neurologist. So now you've lost the precious EARLY time that the drugs might have made a difference. Each case is different and difficult on the care taker. Just don't give yourself any guilt, the job is hard enough and hind-sight is something we just don't possess. All of us that care for our elderly parents and their mental health issues are in my prayers. Encouragement from others and a REAL offer of help (even just an hour) can make enduring our parents last days with mental illness better. Big hug to you.