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

On this topic I read everything I can from every source (library, local hospital, on line, friends, family, this site, in addition to family doctors) and there is a lot of information out there available to all of us, that goes beyond what a doctor may say during a brief and expensive office visit. Often the information is linking whole foods and exercise to good brain health. Much of the research is hopeful in suggesting that our brain health is partially within our own control, if we are careful about the way we live and the good, healthy choices we make.

I wish you well in this journey and hope you continue to be proactive and find the information you are seeking.

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.

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.

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.

It all depends on the type of Dementia your mom has. It seems that you might be dealing with Lewy Body Dementia. This is the one that is only given a confirmation after the loved one as passed away. But the doctors can diagnose with test. A cat scan will show the deterioration of the brain tissue and come up with a diagnoses of progressive dementia. Because that's the only thing they can tell you until after death. I found out with my mom on my own what worked and what didn't and by googling her behavior. It is helpful to know what you are dealing with. I will say...so many of the regular dementia drugs will not work with LBD.
I'm sorry that you lost her so soon after her move to the NH. But don't beat yourself up over it. Dementia of that kind is the worst and its the hardest thing to witness your parent to live with. Your mom was blessed to have you take care of her as long as you did. Thank you for sharing your story. Because there is a lot of caregivers out there that will learn from your experiences. Keep coming back and responding and venting. We are all here to support one another. My mom lost her battle with LBD in January of this year. She changed so much and in the end didn't know her own kids. It was the craziest journey of my life...and these caring souls saved me, encouraged me and ((Hugged)) me. God Bless

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.

My mother was medically diagnosed with dementia well before she passed on.

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!

More a question than a answer. My mother has always had a sharp & cut you deep with her commits, so how do I know what's just her personality, old age or illness ? So confused!

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.

More a question than a answer. My mother has always had a sharp & cut you deep with her commits, so how do I know what's just her personality, old age or illness ? So confused!

After the doctor talked to my husband (after much pleading from me that something was wrong, I thought a mini stroke), she sent him immediatly for a brain scan. After she got results, she called and told me 'Well the good news is, it wasn't a stroke. We need to set up appt to see you both'. A stroke would have been good news. In her office, more testing and drawing things, then she said it's Alzheimers. She made an appt with a neurologist. He said Yes it is definately Alzheimers. This was after looking at the result of the brain scan. Not sure what they see to make that determination. He asked questions, made my husband walk around, and said it was not parkinsons. In MY opinion.... the way my husband acts, acted, loss of words and then speech in justs months after diagnosis, and everything I read and hear about Alzy patients.....I am not sure what the heck he has. I am just tired of him having to live this way.

jujubean,
I hear ya! I also wonder about getting a more specific diagnosis beyond "mild cognitive impairment, beginning of dementia" at this point for my loved one. We just lost another family member with Alz/Lewy Body, but it was 10 years before the more specific diagnosis and only 3 years before he died. The behaviors and reactions to drugs is what drove us to figure out what else was going on with him. I've read up on several tests (MRI, CT, PET scan) and am wondering if we need to persue these tests to get a more definitive diagnosis here at the beginning of the diagnosis? Maybe finding out more specifics will help with treatment, therapy and what the future holds for all of us!

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).

(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.

As far as I know, that only applies to Alzheimer's dementia.

From the Mayo Clinic:

"Doctors can nearly always determine whether you have dementia, and they can often identify whether your dementia is due to Alzheimer's disease. Alzheimer's disease can be diagnosed with complete accuracy only after death, when microscopic examination of the brain reveals the characteristic plaques and tangles."

A DEFINITIVE diagnosis is only possible with autopsy but there are various ways they narrow it down and decide what kind of dementia a person might have.

In nursing school, what I was told was that the findings at autopsy of an Alzheimer's patient was that their brain was like 'cobwebs' which is what they seem to be referring to as "characteristic plaques and tangles."

I totally identify with what puf8159 says about getting doctors to acknowledge something is wrong at an early stage. Have had this experience with my own disorders, let alone those of my mother. As a daughter who lives with a mom, you have the best view of what is truly going on with your mother. Doctors tend to discount anything that doesn't show up in their office, and after all, how much is likely to? I am still going through living with a mother who steadfastly refuses help from the outside (the fear you mentioned; who could blame her?), yet wants me to do everything for her, yet doesn't. She is abusive and violent, forgets her medications, and seems to be in "la la land" much of the time. By not submitting to in-depth examination, she is contributing in large part to her own very sorry future state, and there's nothing I can do about it. For even trying to get her examined, she was told by police that she should kick me out of her house (NOTE: never involve the pd.) I don't get any respect as a loving daughter, since I myself am on disability, and have nowhere else to go due to monetary problems. Instead, I am treated like a leech (completely untrue; I MORE than contribute and no one in my family, including my mom, has spent one single dime on me EVER.) Doctors ask those same questions, and if mom can fake it for even five minutes, she's deemed fine, and I am seen as evil. But I see the emotional changes taking place in her every day. I don't know if doctors are ignorant, or if they're under pressure to never make a diagnosis unless they can absolutely prove it, which is impossible more of the time than most people are led to believe. It's just not that simple. Still, they could be less abrasive and obnoxious, and it would help if they wouldn't treat patients and their families as though they don't know squat, while the doctors know ALL. There is so much more the learn these days than ever, and everyone on this site have made VALIANT efforts in care of their loved ones. You are all so knowledgeable and deserve kudos, not kicks in the face. It would be nice if doctors recognized that.
I would also like to say that taking care of oneself throughout one's life is no absolute preventative for Alzheimer's. My grandmother passed away from the disease, and she took wonderful care of herself (and me!) as far as proper nutrition, exercise, and certainly exercise of her brain. She was a wonderful painter, a political activist who walked the walk (dangerous in her "day"), and a great reader and thinker, right up until the bitter end. I love the way the medical industry tries to either: a. make us feel our medical problems are all under our control (i.e.: OUR FAULT), or b. make us feel that any disorder they don't understand or can't prove is in our minds (i.e.: OUR FAULT). Hopefully, they will progress past this someday, and stop being so fearful themselves, so they can help the public better.

Based on 25 years of dealing family caregiver of loved ones with dementia of the Alzheimer's type (DAT) it is important to understand as other have stated that a "diagnosis" can be made based on presenting symptoms, psychometric testing, blood work, cerebral spinal fluid analysis and scans of the brain. There are close to 50 disease that are defined under dementia and dementia can be caused by trauma as well as drugs, alcohol, etc. which are considered "reversible". All aging brains have plaque regardless of health it is a consequence of aging. However to CONFIRM the diagnosis of Alzheimer's requires a post mortem examination of the brain of the person in question to conclusively prove it. balexander9 had it pretty well nailed down and much more succinctly than I did it here.

I think dementia is grossly under-diagnosed. Hospitals largely ignore its obvious symptoms when elderly patients are admitted. In our family, when my fully lucid relative checked into the hospital for a surgical procedure, he declined within a few days to the point that he was pretty seriously demented. Virtually all of the staff that visited (and that was a lot of specialists, nurses, technicians, etc) made very little of the fact that he had lost a lot of cognitive ability. Even when family members repeatedly brought it up, it was the least of the staff's concerns. They kept ordering tests and procedures, none of them targeted at finding out why he had slipped so far mentally. They kept focusing on everything else and really never told us whether they thought he would regain any of the lost ground or would remain at that level. They really just chalked it up to "it happens some times" ! It made it hard for us to make decisions because he definitely wouldn't have wanted any life-prolonging treatments if there was no hope of having any kind of quality of life.

Thank you to those who posted answers for this question. With reading, learning and hoping I am going to have my husband tested. He is on oxygen, but I do not believe it is the oxygen that has made him so mean. To the point where I feel as if my world could swallow me. You folks are great. thank you so very much for answering this question for the original person.

I'd like to focus on "why are doctors so ignorant?"
I've come to believe that a family care doc is reluctant to diagnose dementia, because of the amount of trouble and potential lawsuits that can come from it.
Especially in the early stages, can you imagine telling someone your mom that she has dementia? And I certainly didn't go to the doctor with my mom until she was reasonably far gone. Dad, who has passed away, didn't either. That was a generational thing, I suppose.
I suspect the best & brightest docs don't study geriatrics - you never see success. That being said, the geriatricians must get into it from a place of incredible compassion, because the pay ain't great, you're probably dealing with medicare , which must be a hassle, and the patient always dies. That being said, I've never seen a geriatrician in action. However, I've met enough MDs to know that you're extremely lucky if you have a good one, and you're doing quite well if you have a competent one. Really, you have to take notes every time you go to a doctor, don't trust them to know about allergies and previous surgery, and assume that the doctor has forgotten as much as your demented parent has!
You have to control the horizontal and the vertical - even the most caring medical professional doesn't know as much as you do about the situation, and they can exhibit stunningly bad judgement. Hang in there.

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.

Witsend -
Whatever the cause of your mother's meanness, Medication might help. I'm talking about antidepressants or antipsychotics. The two people closest to me with dementia both had lifelong "difficult" personalities. They were put on medication in the NH and became a pleasure to be around! How you get her to take it is another matter, but a cooperative doctor might say it's for pain, or it's to improve brain function. With my own father, I learned that actual pain pills improved his mood tremendously. If your body hurts all the time, even a little, it's harder to be nice.

I agree with IsntEasy that dementia is underdiagnosed. Long before my husband was diagnosed with dementia and Parkinsonism, I told his psychiatrist that I had concerns about his functioning and was told, basically, that that was to be expected due to his age (he was around 70 at the time). That is such an annoying attitude because dementia is not necessarily a part of aging since there are many people in their 80s and even 90s whose cognitive and/or motor development is significantly impaired (in some cases, not impaired at all).

A typo - I obviously meant to say that there are many people in their 80s and even 90s who do NOT have cognitive and/or motor impairment.

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.

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.

Elders are both underdiagnosed and overmedicated.

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....

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.